Cognitive Rehabilitation for People with Dementia in Norway: Case Managers’ Experiences from a Pilot Study Open Access

Dementia is a condition that typically progressively worsens, impacting physical, psychological, cognitive, and social functioning, and people with dementia will over time lose their ability to independently engage in daily activities. During the last two decades, structured rehabilitation methods focusing on how to maintain independent functioning in ADL in people with dementia have been developed and tested with positive results [1]. The purpose of rehabilitation is to optimize functioning and reduce disability [2]. Rehabilitation is grounded in a conceptual framework of human functioning, extensively described by WHO [3, 4]. When delivered as an intervention, rehabilitation is function-focused, personalized, and goal-oriented, designed to support and improve functional ability in everyday life.

Current Norwegian legislation on rehabilitation [5] states that all municipalities should provide reablement services to people who require special assistance to regain or maintain their skills and independence. Thus, people with dementia should be eligible for rehabilitation. The municipalities have reablement teams, but they usually work with people who need physical rehabilitation. The healthcare services have not adapted their focus to take account of evidence on the relevance and benefits of rehabilitation for people with cognitive disability. The rehabilitation services are rarely offered to this population. One approach to providing cognitive rehabilitation (CR) for people with dementia described in the research literature is the GREAT CR programme. GREAT CR was developed initially through studies using single-case and experimental designs, and two pilot randomized controlled trials, one targeting people with Alzheimer’s disease [6] and one targeting people with Parkinsonian dementias [7]. The results from these provided the basis for a definitive multi-site RCT, the GREAT trial [8]. GREAT CR had significant positive effect on the activities targeted for both participant and informant rated goal attainment, maintaining the effect at 9 months.

In CR, the person with dementia will set one or more rehabilitation goals to improve functioning in activities of daily living that (s)he finds meaningful but challenging. Examples of activities chosen by participants are writing down appointments in your calendar, using a microwave oven to heat dinner or finding your way to the shopping mall and back home. The goal is established in collaboration with a CR practitioner and should be clearly defined in terms of time and space, as well as being measurable. The person with dementia and the CR practitioner discuss how dementia symptoms have made the activity challenging. Together they make a plan, incorporating enhanced learning techniques, compensatory strategies and/or environmental modifications that the person with dementia can use, to improve functioning in the given activity. The person with dementia practises applying the agreed strategies when doing the activity with regular support from the CR practitioner [9]. Intervention length is flexible but typically lasts between 6 and 10 weeks. During this time, the CR practitioner or a suitably trained support worker visits the person once a week for follow-up on progress with the goal [8, 9].

In line with other implementation studies [9‒11], leadership, sufficient training, and support from the leader and colleagues are facilitators for successful implementation of CR in routine health and social care services. Lack of time to provide the intervention, lack of training, and lack of support from leaders and other colleagues are common barriers.

With an increasing number of home-dwelling people with dementia in Norway [12], there is an urgent need to find efficient methods that can help people with dementia maintain independence in daily living for as long as possible. As CR has shown promising results for continued independent functioning in people with dementia living in their own home, we wanted to explore its feasibility in a pilot study in Norwegian municipal healthcare services. The aim of this study was to investigate dementia case managers’ experiences of using CR in a Norwegian municipality healthcare setting.

In Norway, healthcare is public and financed by the tax system. All municipalities provide necessary health and social care to home-dwelling people with dementia in need of assistance in activities of daily living. Most municipalities have case managers skilled in dementia, usually registered nurses (RNs) or occupational therapists (OTs) [13]. They assist general physicians in the diagnostic evaluations of people suspected of having cognitive decline or dementia. They also provide post-diagnostic support to people with dementia and their family carers. The case managers are often members of municipality dementia resource teams, called memory teams or dementia teams.

To include participants to this pilot study, information about GREAT CR was presented at a digital, national lunch meeting called “professional development for lunch” hosted by the Norwegian Association of Occupational Therapists [14] and at a national conference for dementia case managers, hosted by the Norwegian centre for ageing and health [15]. Case managers or their team leaders who wanted to participate in the study contacted the researchers. The case managers were eligible to participate if they agreed to take the training, take part in the supervision and try CR with two people with dementia from their regular case load. A total of 6 case managers, three RNs and three OTs, five women and one man, representing four municipalities, participated in the study. Table 1 provides a description of the participants. The participants represented urban and rural, small, medium, and large municipalities. Their local leaders all approved of the participation, and the participants volunteered to take part in the study.

The pilot study had two phases.

In phase 1, the case managers learnt the CR approach. To learn CR and become CR practitioners, the participants attended an 8-h e-learning course provided by the University of Exeter. Once a month for 7 months, they participated in digital group supervision sessions, led by a skilled English CR practitioner from the GREAT CR practitioner team. Because this was a pilot, the e-learning course and supervision sessions were in English. In addition, participants met virtually once a week for peer support organized by the Norwegian National Centre for Aging and Health. A CR handbook [16], information sheets about the approach, the Bangor Goal-Setting Interview (BGSI) [17] used to document and score goal attainment, as well as handouts and other material had previously been translated from English to Norwegian.

As soon as the e-learning course was completed the participants recruited people with dementia to the pilot study. During phase 1, each participant agreed to use CR with two people with dementia from their regular caseload. For these two candidates, the workplace was compensated with a standardized sum for the participants’ time out of their normal workday for up to 15 days, including the training and supervision and participating in two focus groups. The first focus group took place towards the end of phase 1.

In phase 2, the participants had become CR practitioners and could use CR in their daily clinical practice as they wanted. Phase 2 lasted for 5 months, and the second focus group took place at the end of phase 2.

The two focus groups were conducted virtually via Microsoft Teams. Focus group interviews are planned discussions with a group of people, often between 4 and 12 in number, conducted by a moderator [18]. The participants are sampled from the study population; in this case, all six dementia case managers. The aim is to obtain knowledge of the participants’ experiences and ideas and illuminate variations in viewpoints on a specific topic [19, 20]. The participants are encouraged to engage in discussion with each other, where the enhanced level of debate provides an opportunity for rich data from a specific population about a particular area of interest.

The interview guide was developed based on the aim of the study. It was sent by email to the participants in advance of the focus groups, so they could prepare for the discussion. The first focus group was conducted when five of the six participants had tried using CR with two people with dementia and the sixth participant (number 6) had tried CR with one person with dementia. All 6 case managers participated in the first focus group. The second focus group was conducted approximately 5 months later, to provide enough time for the participants to use CR in their normal clinical practice. Five of the case managers participated in the second focus group (number 3 did not participate).

The authors M.M. and K.K. conducted both group sessions, which were audio recorded. The duration of the first focus group was 1 h and 21 min, and the second lasted 1 h and 15 min. The focus groups were transcribed verbatim by a professional transcriber and analysed with qualitative directed content analysis with open coding. This implies staying close to the text and describing the visible and obvious [21, 22] and appropriately reflecting the respondents’ experiences.

Coding categories were derived directly from the text [23], by labelling meaning units (e.g., sentences or paragraphs) with codes. Based on these codes, categories and subcategories describing the content of the transcripts were developed [22]. The transcriptions were re-read to see if the categories could be used to further analyse the interviews, and the categories were modified if appropriate. During the interpretation of the data, the researchers discussed and reflected upon the categories [22]. Quotes from the participants were used to ground the meaning units and establish credibility for the analysis. All authors read the transcripts. The authors M.M. and M.M. participated in the main analysis. If they disagreed about an interpretation, K.K. and T.B. were consulted until consensus was reached.

The recorded files and transcriptions were stored on a secure server, accessible to the authors only.

The participants described experiences related to three categories: (1) the training and the written material, (2) professional development, and (3) proposals for solutions on how to implement CR in clinical practice. There were no differences between the OTs’ and the RNs’ experiences. During phase 2, only one participant (number 2) used the approach as part of normal clinical practice, with one person with dementia.

The participants liked the combination of the e-learning course and group supervision. Even though they described struggling with a language barrier, the e-learning course gave them the necessary understanding of what CR is and how to use it. The group supervision and the weekly peer support groups with the other participants provided room for discussions and, as a result, additional insight into the various rehabilitation strategies.

Still, all participants expressed a wish to re-do the e-learning but could not find time during their workday for this. They suggested having a “kick-off” or physical course in addition to the e-learning course. They also thought that for CR to have a future in Norway all CR material, including the e-learning course and written material ought to be translated into Norwegian. Colleagues had told them it would be a barrier to do the course and use the material if it was in English. The clinical setting described and the lay-out used in the material should also be better adapted to the Norwegian cultural context:

The participants suggested adjustments to the rehabilitation plans, for instance by making word lists with the various techniques and strategies. To help the people with dementia remember their goals and to practise, one participant explained how she had created an easy-to-read homework schedule for each of the rehabilitation goals, along with the associated strategies, to help the candidate remember the chosen goals and practise them. She suggested adding this type of schedule as a new tool in CR.

The participants described the new knowledge about CR as being professionally meaningful. They explained that trying the approach out in their own clinical practice was necessary for them to understand who could benefit from CR. For the CR to be effective, they agreed that it was important that the person had mild to moderate, rather than advanced, dementia, and some awareness of difficulties. Another important criterion was motivation to work on the goals: (the candidates) also must have some motivation to go that (...) extra little step to do the work.

The use of CR led the participants to work more closely with the person with dementia than they normally did. They visited the person more frequently than they did as part of their normal practice. This led them to become better acquainted with the person and they felt they gave the person with dementia some hope even though the disease progressed. This contributed to a change in their relationship, where the dementia case manager became more aware of the person’s resources and how he or she coped with everyday life activities: you see (…) more resources and greater potential in many people.

This, in turn, made it easier to help the person find a relevant goal that (s)he was motivated to work on. Finding the right goal emerged as important, as this increased the person’s motivation to practice.

Learning CR had influenced their clinical practice. In the second focus group, one participant stated that she had the approach “in the back of my head” while working. This meant that she asked patients more direct questions about what had become difficult and how they managed everyday activities. One participant said:

In the second focus group, the participants described how CR functioned as a novel way of structuring the work that was already being done in a non-systematic way in the municipalities. One participant said:

The participants had also used CR strategies to guide the family care partner:

They expressed that having a care partner present could be a strength when working on a goal, as the care partner would remind the person with dementia of the goals and strategies. But they were also alert to the risk of family care partners taking over the goal-setting process and disturbing the process of becoming motivated to work on the goal. Furthermore, they experienced that some care partners saw CR as yet another thing they had to help the person with dementia with and did not want to participate because they were tired.

Even though the participants found the approach to be professionally meaningful, there were significant barriers to using it as intended in clinical practice. After completing phase 1, only one participant “initiate(d) the whole (...) approach and everything with goals and things like that” during phase 2. The most important barrier was the use of time. Even though the workplaces were compensated financially for up to 15 days’ work, and all local leaders had agreed to provide participants with the necessary time to do CR, no substitutes were used in the participants’ absence. Thus, it was very difficult for all participants to find the time to first test CR in phase 1 and then use CR in their regular practice in phase 2:

All participants described having waiting lists for assessment work and post-diagnostic support, and this stressed them. They expressed having a bad conscience towards colleagues and other patients for all the things they did not have time for while doing CR:

There was an apparent difference between participants who worked in a team and those who worked alone. It was almost impossible for the lone worker to include patients in the pilot and work with them as much as the approach demanded:

In the second focus group, the participants described how local leaders had to prioritize the approach if the case managers were to find time to use it as intended:

The lack of time made it difficult to ask people with dementia if they wanted to start the rehabilitation process:

The participants described having to spend at least 3–4 weeks to see a change in the person and be able to evaluate whether the approach was likely to be of benefit.

Third, the participants proposed solutions for how CR could be implemented in Norwegian dementia services, especially to solve the issues related to lack of time. They suggested the personnel from the domestic nursing units could use CR the same way they had; not set a goal, but look for resources in the person with dementia, and supervise the person and family carer with the most used techniques and strategies.

The participants suggested that CR-trained case managers could start the CR process by helping the person with dementia set a goal and find suitable strategies. Then particularly interested healthcare personnel from the domestic nursing units or the reablement teams could do the weekly follow-ups. They also suggested incorporating principles of CR in the structured monthly follow-up visits that many municipalities provide for people with dementia.

They also suggested the CR case manager could identify goals that seemed useful, for instance employing CR to teach people with dementia how to use assistive technology. This would not be ideal, as the person’s motivation for working on the goal was important for success. In this category as well, there was a difference between the participants who worked alone in smaller municipalities and those who worked in teams in larger, more urban municipalities. It was easier for the participants from the larger municipalities to see how the approach could be used.

This study investigated dementia case managers’ experience of using the GREAT CR model in a Norwegian municipality healthcare setting. The case managers described their experiences in three areas; the course training and the material, their professional development while learning and using the approach, and their proposed solutions for how the approach could be implemented and used in the municipalities.

The participants liked the e-learning course and learnt the approach, but, not surprisingly, wanted the course and the material to be translated to Norwegian, with clinical examples culturally adapted. Learning CR in a foreign language probably added considerably to both the time and mental effort needed. Transferring a clinical approach from one setting to another often implies modifying it to fit the new setting [24], and for a later study, it can be useful to document modifications using a framework, so it will be possible to compare the new version to the original [25].

In an overstretched dementia service, with a growing number of people with dementia, healthcare personnel increasingly spend their time “putting out fires,” responding to crises instead of preventing them. Staff takes over challenging tasks and do them for the client, rather than building on the person’s strengths and resources to support remaining functions [13]. Although this practice seems time efficient in the moment, it often leads to faster functional decline and loss of independence, as well as more care needs. It is reasonable to believe that all healthcare personnel want to provide the best possible care, but lack of time is a challenge often described when implementing new methods in healthcare services [26].

Learning about rehabilitation for people with dementia and using CR appealed to the participants as professionals. They could use their professional knowledge to teach the person with dementia useful strategies to help them cope with everyday activities, and this improved their own professional experience. For the person with dementia the approach contributed to a sense of hope in a situation with declining functioning. However, using CR stressed the practitioners and they felt bad about other people with dementia who also needed their help and colleagues who had to take over chores. They felt squeezed between using their professional knowledge and the constraints on time.

The diagnostic process is improving and many people with dementia are diagnosed early, sometimes long before they need help from healthcare services. It is a political goal that older people should live safely at home for as long as possible [27]. It is positive for the person with dementia but also financially beneficial for the municipality if this period of independent living can be prolonged [28]. The Norwegian dementia plan 2025 [29] underlines the need for a structured post-diagnostic follow-up and support and describes inadequate follow-up as a risk factor for unnecessary decline in function. By implementing evidence-based rehabilitation methods in the municipalities, decline in function caused by cognitive symptoms can perhaps be delayed. As people with dementia are eligible for rehabilitation [5], and rehabilitation has potential to prolong independence at home, it is easy to argue that it is necessary to implement clinical tools like CR in dementia services. Norwegian dementia healthcare services already have structures in place to implement rehabilitation methods through the case managers or reablement teams. The participants in this study also described how CR provided the participants with a structure for work that was already being done in a non-structured way, for instance when assistive technology was provided for people with dementia. One can argue that it would be wise to use CR strategies to work on techniques that will teach the person with dementia how to use assistive technological devices [30]. This could increase the chance of the device being used and perhaps increase the person independence. However, part of the CR success is the person’s motivation for working on an individually chosen goal. It is not certain a goal set by the case manager would have the same success rate [9].

As described in several implementation studies, leadership commitment is essential when new ways of working are to be implemented [9, 26]. The project was anchored in the local management. This makes it difficult to understand why the case managers’ team leaders did not facilitate use of CR and help the case managers find time to conduct CR in their normal practice. The general impression was that the leaders truly welcomed the approach and wanted the CR-practitioners to be able to spend time on the intervention. Still, dementia case managers usually have a high level of dementia specific knowledge, they have a specialized role in the municipality, and they often have personal knowledge about their clients. This might make it difficult to find qualified substitutes to do their “normal work” when CR practitioners were involved in the CR pilot, even though funds to pay a substitute were provided. Furthermore, it was difficult to predict in advance when a client could be offered CR, and each CR process took only around 6 weeks. The role of case managers is very broad, and they have a high degree of self-determination when it comes to prioritizing their everyday work. This freedom is important to be able to provide the right type of care for each individual client, but it also makes the role a lonesome one. Maybe the only way to free up time for the case managers to use CR would be to strengthen the memory team and have real clinical resources available in the form of more personnel [9].

Finding ways to sustainably implement methods for CR is important, and policy makers and municipality managers should work to find strategies for this. In this study, a suggested solution to the problem of time constraints was having other parts of the healthcare service do the follow-up. This would include strengthening the co-operation between the case manager and the home-care nursing staff, perhaps with a joint meeting, to exchange knowledge about the person and the CR goals and strategies. Whether these services agree to this or have time for it is unknown. As suggested by the case managers, family carers who are in regular contact with the person could probably also contribute to the rehabilitation and follow-up on the CR goals. Supervision to family carers about the benefits of supporting the person in their rehabilitation plan rather than taking over the tasks could be helpful. It depends, however, on what one can expect but also what society and healthcare services can demand from the family carers [28]. To meet the growing need in healthcare services for interventions that empower clients and enable them to use whatever resources and functioning they still have, CR seems to be a good approach. However, doing so requires a shift in how health- and social care services are organized and provided, reorienting services from crisis management to prevention and reablement [9, 31]. Local leaders and municipality managers should be challenged on the implementation of new methods in dementia services. Perhaps if the local leaders took part in the CR e-learning and/or the supervision, they would better understand the need for time to do the intervention. They should also be included in future research on how to facilitate implementation of new ways of working [31].

In addition, both the person with dementia and their next of kin could be included in research on the changes that is needed regarding the way services are organized. A relevant question is whether next of kin would stand on the barricades demanding CR if it was a new drug? The new disease-modifying drugs [32, 33] have moderate effect and potentially severe side effects but are frequently discussed in the media. CR has no side effects and show several positive effects [8, 34] but are rarely portrayed in the media. Could pressure from relatives influence policymakers and funders to ensure a shift from a medical and task-centred to more person-centred dementia care?

The views of the people with dementia and their relatives about their CR intervention were sought, but these are not the focus of this paper. Their experiences will be presented in a future paper.

The fact that the same case managers participated in both focus groups allowed for a more complete understanding of how they used the approach and what was difficult in implementing it. The local leaders in the participating municipalities did not participate in the focus groups, and it is unknown whether they could have shed more light on the issues of lack of time to provide the rehabilitation.

This study has demonstrated that it is feasible to use CR in a Norwegian municipality if enough time is available and sufficient resources are provided. Rehabilitation interventions that increase independence may be of great importance both for quality of life and the opportunity to manage independently at home and might be a way to meet the needs of the growing number of people with dementia. There is a need for continued exploration of how the healthcare service can be organized to make rehabilitation methods like CR a regular part of post-diagnostic support and which goals can be addressed effectively.

All participants signed an informed consent form. The study was approved by the Norwegian Regional Committees for Medical and Health Research Ethics with reference No. 492845.

The authors have no conflicts of interest to declare.

This study is funded by the DAM Foundation via the Norwegian Brain Council. The funder had no role in the design, data collection, data analysis, and reporting of this study.

Conceptualization: Mona Michelet, Kariann Krohne, Thea Catherine Bredholt, Marit Mjørud, Linda Clare, and Suzannah Evans. Formal analysis: Marit Mjørud and Mona Michelet. Funding acquisition and project administration: Mona Michelet. Investigation: Marit Mjørud and Kariann Krohne. Methodology: Marit Mjørud, Kariann Krohne, and Mona Michelet. Writing – original draft: Marit Mjørud. Writing – review and editing: Marit Mjørud, Linda Clare, Suzannah Evans, Mona Michelet, Kariann Krohne, and Thea Catherine Bredholt.

Due to research ethics restrictions, the transcripts of the focus groups cannot be made available to anyone outside the organization. The data that support the findings of this study are not publicly available due to their containing of information that could compromise the privacy of research participants but are available from the second author, [email protected], upon reasonable request.