Occupational therapists’ experiences of working with people with dementia: a qualitative study

Abstract

Background

Dementia is an age-related disease associated with complex health and care needs. Due to demographical shifts, the number of older people with dementia is forecasted to increase. Occupational therapists encounter people with dementia in their daily work, yet little is known about their experience of working with people with dementia.

Aim/objectives

To explore occupational therapist’s experiences of working with people with dementia.

Material and methods

Ten occupational therapists were interviewed using semi-structured interviews. Data were analysed using reflexive thematic analysis.

Results

The results are presented in five different themes: Working with persons who do not recognise decline in their abilities; Saving-face of the person in assessment situations; Facilitating continued engagement in everyday activities; Utilising information provided by care staff; Balancing different preferences on how to proceed.

Conclusion

Occupational therapists perceive a need in their work to employ various face-saving strategies and facilitate engagement in everyday activities. The results are exploratory and additionally research is needed to understand the therapists’ experiences of working with persons with dementia.

Significance

Everyday activities should be tailored to the person’s abilities, with an emphasis on facilitating the person in carrying them out rather than the social environment taking them over.

Keywords:

• Alzheimer’s disease
• clinical reasoning
• occupational therapy
• reflexive thematic analysis, qualitative research

Introduction

Dementia is a syndrome of a chronic and progressive nature that causes disturbances in higher cortical functions (e.g. memory, language, judgement) as well as deterioration in emotional control and social behaviour [1]. Due to demographical changes occurring worldwide [2], the numbers of older people with a dementia diagnosis are forecasted to increase from 50 million cases in 2020 to 150 million cases in 2050 [2,3]. This demographical shift is often portrayed as a challenge which has consequences for how to organise and provide health and care services efficiently [4,5]. As a dementia diagnosis often implies complex and multiple health and care needs [2,3,6], occupational therapists, with various responsibilities who are working in different health and care contexts, will encounter patients with dementia as the disease evolves. Consequently, in order to inform the practice of occupational therapists and thereby utilise resources efficiently, it is important to explore occupational therapists’ experiences of working with persons’ diagnosed with dementia.

In previous research, several challenges have been identified that occupational therapists encounter in their work with persons with dementia. These challenges are related to the institutional context (i.e. legal, administrative, and organisational elements that influence what services can be offered), long waiting times [7,8], lack of knowledge about dementia health care services [9], lack of time to meet patients [10–13], and decreased ability among people with dementia to process information [10]. Furthermore, the dementia diagnosis itself is often associated with negative stereotypical assumptions that have consequences for how older people with dementia are perceived, presented, and treated by others [14–16]. These stereotypical assumptions have also been noted among professionals working with older people with dementia [17].

In their work with persons with dementia, occupational therapists plan and implement interventions to support the person’s remaining abilities [13,18]. Previous research has also shown that occupational therapists encourage persons with dementia to use different technical aids as a mean to compensate for their cognitive decline [19]. Occupational therapists also provide education [19] and motivation for persons with dementia to engage in activities [11,20]. However, there is a risk of a gap between the activities the person with dementia desire to do and what they actually do [21]. Previous research has also shown that occupational therapists select activities in tandem with people with dementia and play a significant role in selecting activities that could have a positive effect on the persons’ well-being and facilitating participation in meaningful activities [22].

Previous research has shown that significant others are a valuable resource for occupational therapists in their work with people with dementia [12,20]. Significant others have also been depicted as a vital support in the implementation of technical aids by instructing persons with dementia on how to use them [10]. Research has also been conducted on occupational therapists’ engagement in educational efforts and skills training for significant others to assist the person with dementia to continue to carry out everyday life activities [18]. Furthermore, the importance of encouraging and supporting family carers to participate in meaningful activities as a mean to manage or reduce stress associated with caregiver burden has also been highlighted in previous research [13].

To explore occupational therapists’ experiences of working with people with dementia is of importance as this group is often depicted as complex and vulnerable [23,24] due to the disease and negative stereotypes associated with dementia [14,23,24]. Therefore, to evolve the understanding for what situations occupational therapists’ encounter in their everyday work with persons with dementia and how they experience these situations are of importance to address. Addressing this could also ensure that the work occupational therapists pursue, is tailored in relation to challenges they experience when working with this group of patients. Therefore, the aim of this study was to explore occupational therapists’ experiences of working with persons with dementia.

Material and methods

This is an exploratory study based on the qualitative method reflexive thematic analysis [25–27]. Reflexive thematic analysis is a method [27] wherein researchers construct themes through a meticulous analytical process [28]. To address the aim of this study, semi-structured interviews [29] were conducted with occupational therapists who have experience of working with persons with dementia.

Data collection

Data for this study was collected in one Swedish region from December 2019 to March 2020. Convenience sampling [30] was used to recruit participants who had worked as occupational therapists for at least one year and who worked with persons with dementia on a weekly basis. Information about the study’s design and aim was disseminated via email to potential participants working as occupational therapists in municipal elder care, primary care, and hospital care at the county council. Out of the 32 approached occupational therapists, 10 agreed to participate. The majority of those who declined participation did so because they did not regularly work with persons with dementia. The recruitment process and interviews were conducted by an occupational therapist (not an author of this paper but recognised in the Acknowledgement section) with prior experience of working with persons with dementia.

Data was collected through semi-structured interviews [29] conducted in person at the participants’ workplaces. A core principle in conducting semi-structured interviews is that both the interviewer and the interviewee engage in interaction with each other to construct an understanding of the phenomenon being studied [28]. Therefore, when conducting a semi-structured interview, the interviewer follows an interview guide, which outlines specific topic areas: how they carried out their practice, how cognitive declines were handled, and dilemmas encountered in their work [28] (examples of questions are presented in Table 1). All interviews were audio-recorded and transcribed verbatim by the interviewer. The interviews varied in duration, ranging from 33 to 67 min, with an average duration of 53 min. In accordance with the recommendations regarding reflexive thematic analysis [25–28] member checking in the form of participants reviewing the transcripts has not been made.

Table 1. Examples of questions extracted from the semi-structured interview guide.

Examples of questions
Describe the challenges of working with people with dementia
Describe the dilemmas you encounter in your work with people with dementia
How do you manage these dilemmas?
Describe concrete situations/examples
Do you have any strategies for working with self-determination for people with dementia? Describe situations where your approach has affected the patient’s self-determination

Participants

In total, 10 occupational therapists participated in the present study. Six were employed by a municipality, working either in community medical care or at residential care facilities. Four worked within the county council, working in primary care, geriatric wards, or memory clinics. All but one of the participants worked exclusively in elder care. All participants were female, with an average age of 49 years, ranging from 22 to 63 years. Their work experience as occupational therapists ranged from 2 to 29 years, with an average of 16 years. Eight participants had extensive experience of working with persons with dementia as occupational therapists, defined here as more than five years of experience. All participants held a bachelor’s degree in occupational therapy. When asked about their educational background, none of the participants mentioned having additional degrees, although some had participated in in-service training at their workplaces.

Data analysis

Reflexive thematic analysis [25–27,31] served as the analytical framework for this study. When conducting reflexive thematic analysis, there are several central analytical phases: becoming familiar with the data, data reduction (i.e. identifying and extracting relevant sequences from the data), condensation, and coding of the extracted sequences, and constructing a thematic representation of the studied phenomenon. These phases guided the analytical process of the present study.

The analytical process began with familiarisation with the data. Both authors thoroughly read and discussed all transcribed interviews to gain a comprehensive understanding of their contents. Subsequently, the first author extracted data relevant to the study’s aim from the transcriptions. In total, 391 sequences were extracted, forming the dataset for the following analysis. These extracted sequences where first condensed and then coded [26,31] by the first author.

The second author reviewed all condensations and then adjusted the codes to ensure consistency in the coding process. Additionally, this procedure facilitated the exploration of alternative perspectives on the studied phenomenon, particularly in cases where differing interpretations arose between the authors [27,28]. The authors met frequently during this phase of the analytical process to discuss differences in coding, ensuring a mutual understanding of each other’s analytical interpretations. Following this intense coding procedure, the codes were utilised to construct a thematic representation consisting of five themes corresponding to the aim of this study. When constructing this thematic representation, both authors revisited the transcriptions, condensations, and codes to ensure that the themes were derived in accordance with the data. At this phase, the authors met to discuss and develop the themes [27,28]. Quotations from the interviews have been translated into English and are included in the Results section to exemplify the presented analysis [32].

Ethical considerations

This study has been conducted in accordance with the Helsinki declaration [33] regarding ethical principles guiding research that involves human subjects. Ethical approval was obtained from the Regional Ethical Review Board (Dnr. 2018/331-31).

Results

The results consist of occupational therapist’s experiences of working with people with dementia and are presented in five different themes: Working with persons who do not recognise decline in their abilities; Saving-face of the person in assessment situations; Facilitating continued engagement in everyday activities; Utilising information provided by care staff; Balancing different preferences on how to proceed.

Working with persons who do not recognise decline in their abilities

When occupational therapists work with persons with dementia, they are encountering people who are experiencing a cognitive decline. Still, some of these persons do not recognise any changes or deterioration in their abilities. These persons were described as challenging to work with because it was perceived as difficult to motivate them to engage in assessments or interventions, as they themselves did not perceive any need for support.

Many of those who comes for an assessment are very worried themselves and have noticed that something is wrong with them. And then there are those who don’t have any problem in the whole world, but where relatives, people around them, those close to them feel that something is not right […] There are challenges with everyone, but those who do not have any insight [regarding] themselves are extremely difficult. Participant 7

When working with persons who do not acknowledge the presence of a dementia disease or recognise their own declining abilities, the participants sometimes allowed these persons to ‘fail’ in their attempts to continue their everyday life as usual. This strategy was employed with the expectation that when they next met that person, his or her understanding of the need for support would have increased and that they would request for or accept support or services that was offered to them.

Saving-face of the person in assessment situations

An essential aspect of the participant’s work as occupational therapists involved conducting both structured and un-structured assessments. These assessments were conducted either as part of a diagnostic process, to evaluate the disease trajectory, or to tailor interventions according with the person’s needs. Assessing a person’s cognitive decline was described as a delicate situation characterised by anxiety and uncertainty among their patients regarding the possibility of a dementia diagnosis. When assessing the cognitive abilities of an older person, the participants experienced that these persons often exhibited nervousness, fear, sadness, aggressiveness, and, to some extent, embarrassment in response to their cognitive decline during the assessment situation.

I try to de-dramatise by sort of just, well, introducing myself, asking how they are doing, how they feel in general, how it is at home. You know, to establish some sort of contact first. Because most of the time you have not met these individuals before. Participant 1

The participants described the use of affirmative feedback when assessing a person’s cognitive status in order to cultivate a positive experience or saving the face of the person in different assessment situations. This approach was employed when the test results were unsatisfactory. By this affirmative feedback, the participants described that they mitigated the situation by downplaying the person’s cognitive decline or the gravity of the test results.

Furthermore, some participants described how they alleviated pressure on the person by incorporating pauses into the assessment procedure. During these pauses, the participants engaged in social interaction over a cup of coffee or asked general questions that they knew that the person with dementia would be able of answering. This approach aimed to foster a sense of accomplishment for the person, as they were able to respond to some questions during the encounter and to create a pleasant atmosphere in the assessment situation.

Facilitating continued engagement in everyday activities

As occupational therapists, the participants emphasised the importance of maintaining meaningful everyday activities such as household chores, social interactions with others, and participating in previously enjoyed leisure activities, thereby not only focusing on activities addressing personal hygiene. This applied to both persons with dementia residing in ordinary housing and those in various institutional settings. Consequently, the participants highlighted the importance of organising and carrying out everyday activities in a manner that allowed for the person to participate according to their abilities. Continued participation in everyday activities was presented as immensely important for persons with dementia, as it according to the participants could enhance the persons overall well-being and reducing the risk of becoming passive and further deteriorate in their abilities.

This woman had become very restless. And then we would train her to resume everyday activities that she had often performed previously. It worked very well and was incredibly positive for her. And she found it very enjoyable, and she became less restless and more peaceful. Participant 3

Furthermore, it was described that the way significant others and care staff treated the person with dementia had a direct impact on whether they could engage in everyday activities. If the persons with dementia were consistently portrayed as incompetent or repeatedly discouraged from participating in certain activities, it was described as detrimental to his or her involvement in everyday activities and could potentially become a self-fulfilling prophecy. Therefore, the participants described that they sometimes conducted their work without the presence of the persons’ significant others.

The dilemma is often associated with what relatives do. How do significant others deal with this? Are they [significant others] trying to validate the person, or are they trying to correct or educate [the person with dementia]? That I think is the most demanding thing, trying to get relatives to understand what dementia means and what it implies. Participant 2

Utilising information provided by care staff

Care staff were described as essential collaborators for occupational therapists when it came to working with persons with dementia. As occupational therapists, the participants described having limited opportunities to assess the person’s need ‘fairly’, primarily due to few and brief meetings with them. Furthermore, the participants highlighted that a person in the later stage of the dementia disease trajectory often had more confidence in care staff, whom they interacted with on a daily basis. In these cases, interventions were described to be offered or implemented based on the care staff’s recommendations or assessments, such as providing a showering stool or a toilet extension without thoroughly assessing the person’s needs.

Often it may be that the person in question has more confidence in the home care staff because they meet them every day. And especially their contact person. And they trust this person. Then it might be easier for me to come in and to put it frankly, to be a seller of a technical aid. Then this contact person can argue for and demonstrate the advantages of the aid. Participant 9

Information gathered from care staff was perceived as essential for the participants to utilise when carrying out their work. However, the participants expressed scepticism regarding this information provided to them by care staff. They explained that this scepticism stemmed from the fact that some care staff lacked knowledge about dementia or were more interested in pursuing their own agenda of how to proceed with a person with dementia from a caring perspective. Thereby downplaying the importance of making sure that the person with dementia could continue to carry out meaningful activities. The participants described that they had to consider this when working with a person with dementia. Therefore, they emphasised the importance of conducting their own assessment of the person’s situation as occupational therapists.

If I am about to meet a person with dementia I have never met before who is very advanced in their dementia, I always talk with the nursing staff, who I consider to be experts on that person. But then I have to interpret what they say, too. Because you can also get stuck in your thinking and may think that there is nothing you can do if you are working with the person based on the staff’s [description]. Participant 8

Balancing different preferences on how to proceed

When working with persons with dementia, the participants described a delicate situation in which they had to navigated between the person’s and their significant other’s perspectives and preferences on how to proceed with different support or services. On the one hand, they needed to respect the person’s legal right to self-determination regarding health and care services, which includes among other things the option to either accept or decline support or services. On the other hand, they had to meet the expectations of significant others who were requesting various forms of support or interventions for the person with dementia. This tension was perceived as challenging to manage, as the participants sometimes had to acknowledge both the person’s limited understanding of the disease and the significant other’s requests for support, which might be conflicting. Consequently, participants described the need to balance between different wishes and preferences regarding how to proceed.

But how to approach this so that it is ethically right, so that they have some kind of self-determination. So that you do not persuade them or talk around what really needs to be decided. So that you include self-determination in the work you do. So that the person can be involved in saying ‘this is what I want, and this is what I do not want’. But you know that, if they say ‘no’, they could potentially signify ‘yes’, although I do not know what [they mean]. I find it incredibly challenging to find a good way to do that. Participant 1

Furthermore, as occupational therapists, the participants emphasised the importance of building an alliance with significant others in order to provide services for persons with dementia. To establish this alliance, the participants described that they had to respond to significant others’ requests for support and acknowledge their stressful situation, even when it conflicted with the wishes or preferences of the person with dementia.

Much is about making sure that everything works. Do relatives need support? Day care? Should we pilot them to different services after [the person is] diagnosed? Participant 7

Significant others could also serve as gatekeepers, controlling access to the person with dementia. The participants described how some significant others, without consulting the person with dementia, declined services as they perceived these services as redundant or believed the person was too ill to benefit from them, or they wanted to shield their loved ones from an uncomfortable situation.

Discussion

The results of this study explore several distinct experiences pertaining to the participants everyday work with persons with dementia. As our results suggest, working with persons with dementia requires that occupational therapists handle a complex situation involving the person with dementia, their significant others and care staff, who might have different preferences or agendas on how to proceed. Furthermore, due to the disease, the person with dementia might not acknowledge the disease and its consequences, and consequently, the occupational therapists described how they adjusted their work to the situation at hand. In relation to this, the results suggests that a pragmatic stance was often used, so as to work with the intention to provide sufficient support but also simultaneously ensure that the person was treated with respect and dignity.

The results suggests that during assessments related to the diagnostic process, the occupational therapists adapted their questions to the person’s reactions and abilities, so as to make the context less demanding or less frightening. By talking about well-known parts of the person’s life history, the participants tried to construct a story about previous experiences together with the person with dementia, even though being in a stressful situation. The use of narrative emplotment [34], has previously been described as a vital tool for occupational therapists in motivating patients to participate in rehabilitation, and in making sense of and constructing an understanding of the future in relation to the person’s disease or disability [34]. Our study adds to the use of narratives to de-dramatize stressful situations when working with persons with dementia, thereby encouraging the person to continue to participate in occupational therapy interventions while at the same time maintaining a positive experience of the encounter. For example, participants described that they protected the person from feelings of being ashamed connected with not managing diagnostic tests. This was applied to make it possible for the person with dementia to present or experiencing themselves as being a competent actor, thereby preserving the integrity and confidence of persons with dementia – in other words, to save-face. In an earlier study [35] autobiographical stories were depicted as essential for use in encounters between professionals and people with dementia to create a good working relationship. To achieve this relationship, the questions posed did not address either the dementia disease or the everyday life consequences associated with the disease, but rather questions of a ‘non-threatening’ character that the person with dementia would know the answers to such as about their family members or what they had worked with previously [35]. This is akin to how the participants in this study described handling patients’ emotional reactions during the diagnostic process.

A central assumption in occupational therapy is the importance of engagement in (meaningful) activities for health and well-being [36]. This was also identified in the results of the present study, in facilitating or ensuring that meaningful everyday activities were carried out, by the person with dementia, to the fullest extent possible. The results emphasise activities that are meaningful for the person with dementia to carry out or participate in such as leisure activities or social interaction with others and not only be supported in managing their personal hygiene. In relation to this, previous studies highlight the importance of selecting activities together with the person with dementia [22], and in encouraging the person to participate in meaningful activities [11,20]. This study underscores the importance of occupational therapists challenging other relevant actor’s attitudes or beliefs [14] about people with dementia and their preferences regarding how best to proceed [20]. This could include, for example, what care staff perceive to be important for the person to manage or engage in when utilising information provided by them, or how significant others behave in relation to the person’s ability to engage in everyday activities. These actions, undertaken to ensure that one’s practice remains person-centred, is highlighted by several scholars as a central feature in occupational therapy [20,37–40].

The results highlight that the context has a significant impact on how occupational therapists presented their work with persons with dementia. In our results, this context consists of persons with dementia, significant others, and care staff. These actors might have expectations and requests for services that might be in contradiction with each other. Our results provide an initial understanding of the balancing act occupational therapists are engaged in, as persons with dementia, their significant others, and care staff might have varied preferences or perspective on how best to proceed or which needs should be addressed. The importance of respecting a person’s right to self-determination while at the same time catering to the needs of the person’s significant other can be challenging as our results suggests and requiring a great deal of sensitivity from the occupational therapist. The legislative context of this study must be acknowledged in relation to this result [41]. In Sweden, there is a strong emphasis on all adults’ right to self-determination in laws and regulations [42]. Consequently, older people cannot be declared incompetent to make decisions due to a lack of decision-making capacity [43]. Thereby, it is not possible to impose elder care services on a person with dementia if he or she does not give their consent [44]. Still, how the principle of self-determination is understood and applied by occupational therapists, working in Swedish eldercare, has so far received little scholarly attention.

Implications for practice

There are several implications for occupational therapy practice based on the results of the present study. The results suggest that occupational therapists must be prepared to handle emotional reactions that might arise during cognitive assessments. This can be achieved by focusing on the person’s remaining abilities, creating a positive experience in the situation, and creating a relaxed atmosphere when meeting people with a (potential) dementia diagnosis. Our results also highlight the importance of incorporating pauses in assessments and promoting social interaction during patient encounters.

The results also underscore the importance of everyday activities for enhancing the well-being of persons with dementia. Therefore, everyday activities should be tailored to the person’s abilities, with an emphasis on providing support in carrying them out rather than taking over them. In this regard, occupational therapists should be attentive to the social environment to prevent any detriment to the person with dementia. In some cases, it might be more beneficial for the person if significant others are not present, as their presence could impede his or her engagement in everyday activities.

Finally, our results shed light on the importance of collaborating with care staff, who might possess a deeper understanding of the person, providing valuable insights to inform the practice of occupational therapists in their work with persons with dementia. However, our results suggest that information from care staff and significant others should be handled with care to ensure that it aligns with the person’s preferences.

Further research

This explorative study sheds light on occupational therapists’ experiences of working with persons with dementia. While this study focuses on the professional perspective, future research should involve persons with dementia as participants to develop their perspective on occupational therapy, thereby informing the professional practice of occupational therapy. Furthermore, how occupational therapist applies and works in relation to legislation concerning self-determination [42] and how they juggle various preferences from everyone involved in the process of providing and receiving services merits further research. Additionally, studying the work of occupational therapists in relation to persons with dementia could involve collecting and analysing data from actual patients encounters, such as utilising discourse analysis of audio recording from assessment situations carried out by occupational therapists. This form of naturalistic data is often considered a way to study a phenomenon as it unfolds in practice [45]. Also repeating a similar study with a more diverse and larger group of occupational therapists might help to better understand how contextual and personal factors might influence practice from the perspective of the therapists.

Methodological considerations

This study has some methodological limitations that should be considered when interpreting the results. In this study, a convenience sampling was employed, and 10 occupational therapists participated. This could potentially lead to a skewed representation of the studied phenomenon. Especially considering that the occupational therapists may share similar practice-related conditions, as they are all from a limited geographical area. When conducting reflective thematic analysis, a smaller sample size can facilitate the generation of more in-depth analysis. If one uses a larger sample size, there is a risk that the analytical process becomes superficial [27].

When conducting reflective thematic analysis, the results are constructed through a meticulous analytic process. Therefore, it is essential to provide transparency regarding the researchers’ pre-understanding of the studied phenomenon [27,28]. Both authors, as well as the interviewer, are registered occupational therapists. The authors have previously conducted research related to older people, in which various perspectives have been utilised such as citizenship perspective for people with dementia, welfare technology for older people, social day centres to promote active and healthy ageing. In relation to this, to ensure a robust analysis, continuous discussions have occurred throughout the analytical process aiming to achieve a greater depth in the analysis rather than relying on one researcher’s preunderstandings [27,28].

Conclusion

Occupational therapists may encounter emotional reactions during cognitive assessments that they must address and handle in their work with people with dementia. Furthermore, (meaningful) everyday activities should be tailored to the person’s abilities, with an emphasis on providing support in carrying them out rather than other people taking them over. It is also vital to consider the unique person, the situation, and the person’s own preferences to ensure a person-centred practice. To facilitate engagement in everyday activities, occupational therapist should also take into consideration the social environment, as it could affect the person’s engagement. Finally, our results contribute to a better understanding of people with dementia as a vulnerable group who may not have the same ability as their significant others to request and negotiate services with occupational therapists.

Acknowledgements

The authors thank Sofia Johansson, registered OT, for her contribution in conducting the interviews. We also thank the participants for their valuable contributions.

Disclosure statement

No potential conflict of interest was reported by the author(s).