EMPIRICAL STUDIES
doi: 10.1111/scs.12107
Implementation of a multicomponent psychosocial programme for persons with dementia and their families in Norwegian municipalities: experiences from the perspective of healthcare professionals who performed the intervention Aud Johannessen RN, DrPH (Post Doc)1, Lene Povlsen RN, DrPH (Docent)2, Frøydis Bruvik RN (Doctoral Student)1 and Ingun Ulstein MD, PhD (Old-age Psychiatrist, Consultant)3 1
Ageing and Health, Norwegian Centre for Research, Education and Service Development, Vestfold Hospital Trust, Tønsberg, Norway, Nordic School of Public Health NHV, Gothenburg, Sweden and 3Old-Age Psychiatric Department, Oslo University Hospital, Asker, Norway
2
Scand J Caring Sci; 2014; 28; 749–756 Implementation of a multicomponent psychosocial programme for persons with dementia and their families in Norwegian municipalities: experiences from the perspective of healthcare professionals who performed the intervention
Background: A randomised controlled intervention study was conducted in 17 Norwegian municipalities to provide home-dwelling people with dementia and their families with knowledge and skills to cope with the emerging problems and stresses of everyday life. It included training health professionals to carry out the intervention. Since little is known about possible benefits for health professionals of participating in such a study in terms of knowledge and change of practice as well as their views on whether the intervention is useful, we carried out this study. Aim: To investigate the outcome of the study from the perspective of the healthcare professionals who participated in the intervention. Method: Interviews with 19 health professionals were performed during 2012, using three focus groups and six individual interviews. The sample was purposive and included informants aged 34–61 years from 13 municipalities.
Introduction The prevalence of dementia is expected to increase dramatically in the entire world in the decades to come (1). It has been estimated that approximately 71 000 people Correspondence to: Aud Johannessen, Ageing and Health, Norwegian Centre for Research, Education and Service Development, Vestfold Hospital Trust, PO Box 2136 NO-3103 Tønsberg, Norway. E-mail: [email protected] © 2013 Nordic College of Caring Science
Results: Three main categories emerged: challenges, new knowledge and service development. The category challenges details the challenges connected with professionals’ participation in the intervention and how they dealt with them and is described in three subcategories. The category new knowledge demonstrates the knowledge the professionals achieved while conducting the intervention and is described through three subcategories. Service development presented how the informants’ experiences could contribute to improve the provision of care and details in one subcategory. Conclusion: The results revealed a need for more knowledge among health professionals about the situation of home-dwelling persons with dementia and their families. The study indicated that health professionals must be more aware of these persons’ abilities to find their own solutions to their problems. Structured individual interventions as well as group-based interventions in the early stages of dementia and throughout the course of the disorder seem beneficial. There is a need for better collaboration between the specialist health services, GPs and health workers in the municipalities. Keywords: dementia, family carers, improvement of care, community-based services, qualitative approach. Submitted 7 June 2013, Accepted 20 November 2013
in Norway suffer from dementia (2). Most live in their own homes with assistance from close family members until the later stages of the disorder (3). However, carers of persons with dementia are at risk of developing stressrelated health problems, caused by the burden of care and symptoms related to dementia (4). In addition, both the family carer and the person with dementia are at risk of social isolation and a reduced quality of life (5, 6). The need for help in everyday life increases gradually as the disease progresses (7). From a public health perspective, it is important to provide a variety of services 749
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for these families during the course of the disease, so as to maintain activities – thereby preventing social isolation and promoting health (6–8). Since the availability of suitable day care services in Norway does not match the number of people with dementia (9), there is a need to provide the families with the resources and skills they need to cope with the emerging problems and stresses of everyday life. The randomized controlled trial (RCT) ‘A psychosocial intervention programme for home-dwelling persons with dementia and their family carers’ was conducted in 17 municipalities all over Norway from 2009 to 2012. It aimed to evaluate a multicomponent programme for families with dementia and included training health professionals to recruit and carry out the baseline assessment of the participants and conducting the intervention. Apart from this study, there is currently little known about possible benefits for health professionals of participating in such a study in terms of knowledge and change of practice, as well as their views on whether the intervention is feasible and useful for persons with dementia and their carers.
The intervention programme The intervention lasted for 18 months and was based on feedback from family carers who had participated in a previous Norwegian psychosocial study (10, 11). It consisted of educating the primary family carers about the pathology of dementia, how to handle the symptoms, sorrow and losses associated with dementia and about legislation and their rights. The carers received five counselling sessions in which the stresses endured by the family and their resources were identified. The person with dementia was invited to join two meetings, whereas the extended family participated in one meeting. Furthermore, the carers were introduced to cognitive techniques such as structured problem-solving (10, 11). Thereafter, separate groups were offered for carers and for persons with dementia, four to eight people in each group. The first six meetings took place approximately every fortnight, while the two booster sessions took place 15 and 18 months after inclusion. A structured manual was developed, describing how to conduct each element of the intervention. In addition, the administrators of the participating municipalities had signed an agreement with the management of the study regarding economy, the use of local resources and mutual obligations to obtain a local base and support of the study.
Aim To investigate the outcome of the study from the perspective of the healthcare professionals who participated in the intervention.
Methods To explore the aim for this study, qualitative interviews were performed with healthcare professionals who had been involved in the recruitment and baseline assessment of the participants in the RCT study as well as in the intervention. The informants in the present study were collected purposively in order to strive for variation. A total of 18 woman and one man, aged 34–61 years, were interviewed in 2012 within a month after they had completed the intervention. The informants had worked in this field for between three and 25 years. Fifteen were nurses, three were occupational therapists, and one was a nursing assistant. Fourteen of them had participated in other educational programmes about the elderly and dementia; 10 had prior experience of running groups. They came from 13 urban and rural municipalities. The informants were contacted by telephone and asked to participate. Thirteen informants from municipalities located close to each other were divided into three focus groups, one group consisting of three informants, one group with four informants and one group with six members. The additional six interviews were conducted individually, because of long distance between the municipalities. An interview guide based on thematic questions was applied. It contained two main questions focusing on the informants’ experiences from participating in the study and how municipalities might organise future services for these families. Depending on their replies, the aspects and ideas raised by the informants led to further questions in order to obtain additional information. The interviews were carried out by author AJ. They lasted 20–70 minutes and were tape-recorded. Two focus groups were conducted in a neutral meeting room in a community office, and the third group met in a hotel room. The individual interviews took place at the informants’ work places at a time and date suitable for them. Three of these interviews were carried out by telephone. The recorded interviews were transcribed verbatim by a professional typist within a week after each interview. A quality control check of the transcripts was performed by listening to the tapes while reading the interviews. The transcribed 118 pages of data were analysed by manifest qualitative content analysis (12). Initially, the transcribed texts were read carefully several times to establish an overall impression. Since no substantial differences as regard contents or depth were identified between the data collected individually and from focus group discussions, respectively, the analysis was performed as a whole. Then, ‘meaning units’, that is, words and sentences expressing a central meaning, were identified and later on systematically condensed without changing the original meaning. At the second stage, the condensed units were labelled with a code stating their © 2013 Nordic College of Caring Science
Multicomponent programme for families content. In the third and final stage, categories and subcategories were created. These consisted of groups of codes according to the categories of the interviews. Special attention was paid to establishing clear differences between and similarities within codes and categories (12). Author AJ had principal responsibility for the analysis, but the process was continuously discussed with the co authors.
Ethics This study follows the ethical principles outlined in the Helsinki declaration (13) and by the Regional Committee for Ethics in Medical Research, Southern Norway. The informants were given oral and written information, and oral informed consent was collected before they were interviewed.
Results Three categories relating to the informants experiences emerged (Table 1). Each category includes a number of subcategories presenting different aspects of the informants’ expressions. Quotations from the interviews are presented to help the reader to evaluate the credibility of the results.
Challenges This category challenges details the informants’ perceptions of the many challenges their participation in the intervention presented and how they dealt with them and is described in three subcategories being equipped for the intervention, recruiting participants and conducting the programme. Being equipped for the intervention. It had been exciting and interesting to participate in the training prior to the intervention study, but challenging and even hard to learn the methods to be used. It had been a positive experience to participate in the training workshops ahead
Table 1 Categories and subcategories related to healthcare professionals experiences of a multicomponent programme for persons with dementia and their families Category
Subcategory
Challenges
Being equipped for the intervention Recruiting participants Conducting the programme About persons with dementia About the situation of family carers About the healthcare workers themselves Changing methods of practice
New knowledge
Service development
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of the intervention. However, some of the training could have taken place in smaller groups to make the participants feel freer to talk. Informants from municipalities where the subsequent recruitment process had been long and difficult said that education and training had been provided too early: The work-shops should have been organized in smaller groups, because then it is easier to get to know each other. The work-shop sessions came also far too early. When starting the first counselling meetings and group meetings, the informants did not feel that they were in control. In retrospect, they acknowledged that they had received enough training. We got enough training; it was alright, and I was glad that everything was not too detailed. You have to put up with uncertainty and find solutions that fit. I think it was a little bit like that, and we just had to jump into it. I liked that. Recruiting participants. The informants described different ways of recruiting participants. The idea was to include home-dwelling persons with mild-to-moderate dementia, but it was difficult to recruit persons who fulfilled these criteria. This led to a prolonged recruitment period and resulted in fewer participants than planned, exaggerated by dropouts and deaths before the intervention could start. Some carers had refused to participate, because of the randomisation, that is, they were not sure of being included in the intervention. According to some informants, recruitment was easier because the persons with dementia were included, and the groups for carers and patients took place at the same time and location: One of the reasons the carers were actually able to participate [in the groups] was that someone looked after the family member with dementia while they were in their own groups. Some of the carers could not get away, even for five minutes, and in this way they also got a break during the evening. The fact that memory clinics did not always inform the municipalities about new dementia cases presented an obstacle to recruitment. It appeared that although other departments in the municipality knew of families who could have been included, the professionals were not informed about the study. This made the informants aware of the need for better collaboration when running projects and establishing new services. Some had tried to contact eligible families through sources such as ‘courses for family carers’, newspapers, other families with a person with dementia, other services in the municipality and general practitioners (GPs). Recruitment was easier if health professionals had already established routines for getting in contact with these families. Sometimes family carers had been motivated to participate by the informants contacting them several times, explaining the study to them:
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A. Johannessen et al. Actually, the groups fit everyone, but of course there may be carers who feel that they do not want to sit in a group talking about their problems. We knew that these opinions existed, but when they [the carers] finally did join the group, they found it was in fact useful for them anyway.
Conducting the programme. The informants described various experiences of running the intervention. One challenge was how to keep the structure and use the required methods, which was easier to do during the counselling sessions than during the group meetings. The counselling sessions were time-consuming but important. Especially the counselling meeting with the extended family seemed to reduce conflicts and contribute to better collaboration within the family. This was described as an amazing experience: A daughter called me one day and said: I just have to tell you that I can now manage to take care of my mother. I know what to do, and now I just know I have to go there first and then my brother will follow on… Well, at last we have come to a very good agreement on how to do it. Some informants had experienced difficulties following the manual during the group meetings. On the one hand, the carers seemed to have a strong urge to express their feelings and frustrations and did not necessarily want to focus on how to solve problems, and it was perceived as difficult to stop them. It was easier for the informants to keep the structure and use the methods when they had realised that they had to take control over the group process to achieve the purpose of the meetings. On the other hand, it was a joy to see that carers were able to open up and include other participants in the dialogue and amazing to observe the brilliant suggestions they came up with to help each other. The biggest challenge had been the groups for persons with dementia. Because of the long recruitment period in many municipalities, most of the dementia patients had been in an advanced stage of the disease when the groups started. This resulted in difficulties discussing the themes. The informants had solved this problem by organising practical activities instead, primarily trying to give the participants a pleasant experience. They reported that the people in the earlier stages of the disease badly needed to express themselves and get to know more about dementia, both by speaking to the group leaders and by talking to the group. To be able to face the challenges, it was helpful to have two leaders in each group who could support each other and address problems associated with the heterogeneity of the groups. The group leaders said they needed supervision, especially in handling a high degree of sorrow and sadness or loyalty conflicts arising from the carers’ complaints about services.
The professionals received a lot of praise from the carers and persons with dementia, which stimulated them while they were facing the challenges. They had experienced lack of support and response from local colleagues, but had found it valuable to meet health professionals from other municipalities: To meet others who work with the same focus, and do what I do in my job, has been very inspiring. I think that I have met an incredible number of clever people during the meetings we had; well, I think it has just been very good.
New knowledge The new knowledge presents the knowledge the informants gained while conducting the intervention. The variation of this new knowledge is contained in the subcategories about persons with dementia, about the situation of family carers and about the healthcare workers themselves. About persons with dementia. Running the groups for persons with dementia had been an amazing experience for the informants who felt they had underestimated these persons’ insight into their situation: We learned that we have actually underestimated these people. We really got a wake-up call about that. No matter how mentally reduced they are, they are not necessarily totally gone//…..//That was surprising. It had come as a surprise that persons with dementia were able to ask questions about the disease and articulate their experiences of memory losses and anxiety about what to expect for the future. The informants had not been aware of this because they usually met patients in the later stages of the disease. During the study, they learned that like the family carers, persons with dementia needed someone to talk to, to be taken seriously and not being overlooked. I have heard several patients saying that they also wanted to talk. The unexpected but reasonable questions of the persons with dementia had made the informants aware of the importance of listening and talking to the persons with dementia. It was unexpected that the people with dementia had such a high level of caring for and safeguarding each other, even though they were at quite different stages of dementia. The persons with dementia also thought about their family carers’ burden day by day. The themes presented in the manual for group meetings of persons in the earlier and moderate stages of dementia were central for them, while the group meetings were merely nice social settings for those with reduced awareness of their cognitive dysfunction or in an advanced stage of the disorder. Still, even they quite © 2013 Nordic College of Caring Science
Multicomponent programme for families frequently managed to have a dialogue and were able to put their feelings into words. The informants said it was easier to start a dialogue when they had activities going on. It did not feel natural just to sit around a table talking. The informants learned to think about personalities and gender when planning activities and to accept that some participants were not able to take part in the whole activity process: They could talk and share experiences, something most of them seemed to be in need of. Some were talking a lot about their memory loss. Sometimes it could be difficult to follow the themes and not everyone was able to follow the conversation, so some might be listening very carefully and some starting to wander about. It seemed that everyone had a good time at the meetings. About the situation of family carers. The study had given the informants a great opportunity to understand the family carers’ situation better. The carers had a lot of knowledge and experiences to share – troublesome situations in everyday life that had been unknown to the professionals: A big surprise was the enormous grief and sorrow the carers had. I had not been aware of that earlier. It had come as a surprise that many carers found the groups more beneficial than the counselling sessions and that the professionals’ ratings of single sessions did not always correspond with those of the carers. The carers felt more comfortable in the groups when they knew that their family members with dementia were having a good time. It was amazing how fast the carers managed to establish confidence in each other, how they supported each other and to a high degree looked forward to the meetings. Even though some initially had difficulties talking about their situation, the carers just needed time to feel comfortable in the group. Some carers had even continued to meet after the group sessions had ended. It was a new experience to learn how differently dementia affected a family. Some carers had difficulty talking to their children about the situation, while others had found that family members reinforced their feelings of guilt. The counselling sessions with the extended family had therefore been beneficial in contributing to enhanced collaboration within the family due to a better understanding of the situation: The counselling meeting together with the extended family resulted in more contact between father and son. He meets with his father more frequently now and it has helped him. About the healthcare workers themselves. The structure and methods used and the possibility of spending more time with these families enhanced the informants’ knowledge © 2013 Nordic College of Caring Science
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about dementia and work that could be done with these families. The informants felt more comfortable and safe in their role and conducted the dialogue more sensitively, which made it easier to find ways to work even with families with which initially it had been difficult to collaborate. Spending time with the families, listening to them and providing them with confidence in their ability to find their own solutions, was perceived as both interesting and rewarding and contributed to the informants’ competence. Some reported that they had changed their views of family carers and the healthcare system after the project: Listening to what the carers actually think about health care workers and our system, how health care is organized, how they are met and what they actually want, what they need and what they are missing. This is something that has given me many ‘ah-ha’ experiences and taught me to think differently about services. The informants had learned to use new mapping tools, which they had found challenging at first but easier and useful after a while. They learned that it was not that easy to plan groups for persons with dementia within the framework of a RCT as they could not include group members with approximately the same degree of functional loss, something that would have been easier in ordinary practice. Another important effect of participating in the study was that they had learned the importance of listening and not only giving advice: Something I have really learned is to work with ‘my hands behind my back’ in the dialogue with carers. It is an art to just sit there quietly and let them carry on speaking… because they actually have the answers themselves.
Service development This category service development demonstrates how the informants’ experiences of the intervention could contribute to improving the care of and services for families of dementia patients. The variation of this service development is contained in one subcategory presented and described in changing methods of practice. Changing methods of practice. Municipalities should establish a variety of services such as counselling sessions, educational programmes and groups for these families, as they need support throughout the whole course of the disease. The informants saw the need for better collaboration between memory clinics, GPs and different municipality departments, something they had not been fully aware of before. When meeting families of persons with dementia in the early stages of the disease, it would be possible to act as a channel to provide them with information about the services. The study had provided knowledge about how to improve and individualise
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contact and support for families with a person with newly diagnosed dementia and to establish better collaboration: One thing that we actually have not talked about is that I now have much better contact with my collaborators, such as the specialist health care providers, the GPs and different departments in the municipality. The new methods learned as part of the study could contribute to offering more structured and comprehensive support and be useful in sorting out the reasons for symptoms linked to dementia and finding solutions to the problems. The informants suggested that a contact person from the municipality should be assigned to examine the family’s need for support when a person was diagnosed with dementia. The experience of the counselling and group sessions made it easier to prioritise this kind of service: When we offered the sessions we acquired the advantage of knowing these families in a better way and it was easier to be aware of their needs…// …//So it becomes easier to follow these families on a more regular basis, and it is a priority to continue the counselling sessions. There should be time and space for running groups for family carers and persons with dementia, and the informants wanted to try to implement this as part of the caring plan. Some felt it was natural to offer group meetings in addition to the already established ‘courses for family carers’ because they were in need of more support. In one municipality, the informants had applied for money in order to be able to continue the group meetings. Proposals for changes of the intervention design included more subsequent group meetings. The informants would continue with the same themes, but other themes that might be added were suggested, linked to aspects such as the function of guardians and economic support. Also, the themes about legislation and rights could be repeated. Moreover, it might be appropriate to include around six members in each group for carers, and if possible, offer separate groups for families with a person with dementia aged 65 and below, for adult children, and for spouses. Another suggestion was to contact the families on a regular basis: We saw how valuable the support was to these families. Even a telephone call was important in making the carers feel safe. Sometimes that was enough.
Discussion The main result of this study is the increased awareness among the participating health professionals about the ability of persons with dementia to express their needs and interest in achieving information about their condition. The obvious lack of knowledge about the capacity of persons with dementia may explain why there has
been a tendency to exclude them when developing services (14–17). The reason for this could be that services explicitly focusing on the persons with dementia have not been asked for, as health professionals in the municipalities usually meet the persons in the stages of the disorder when it has seemed more appropriate to offer care. The persons also are presumed not to be able to express their needs. As other studies (14, 15) have suggested, this new knowledge about the capacity and needs of the persons with dementia should result in the development of interventions for home-dwelling persons in the early stages of dementia, not only for care in the more advanced stages. Low threshold services such as educational programmes for carers as well as a wide range of activities and the possibility of meeting other people in the same situation may be beneficial for the person with dementia and their family carers. The informants seemed to be surprised by the high degree of sorrow and sadness expressed by the carers. These feelings could explain the carers’ reluctance to accept their family member’s mental impairment and be the reason for delayed referral to services in the municipalities. Also, the loyalty conflict some informants felt, because the participants had complained about the lack of services in the municipality, might be avoided by handing the responsibility for future interventions to, for example, the specialist health services or dementia organisations. Still, a person suffering from dementia will be the responsibility of local healthcare services. Furthermore, the need to establish a good and continuous dialogue and collaborate with persons with dementia and their family carers is important and in line with the Norwegian health and care legislation (18). The informants’ experiences of dialogue with these families may contribute to developing the intervention as they had suggested in the future. The informants said that the methods they had learned had enabled them to handle the challenges they met during the intervention in an appropriate and effective way. Their being a receptive interlocutor instead of giving advices permitted the carers to mention their own resources and find good solutions themselves, which many professionals saw as a good and new way of working. Still, they differed as to what extent they would continue to use the methods they had learned in their ordinary work. It therefore might be beneficial to educate healthcare professionals to help them use evidence-based methods that encompass the interaction between people in order to improve psychological and social functioning, including well-being, interpersonal relationship and daily living skills aiming to empower persons with dementia and their families’ as described in the INTERDEM manifesto (19). Some informants claimed that they lacked the support from local colleagues. This may explain why only a few professionals said that the study had resulted in a general © 2013 Nordic College of Caring Science
Multicomponent programme for families change in the provision of services for these families in the participating municipalities. Regular meetings or reports to the authorities in the participating municipalities could possibly have ensured that the study was better anchored locally and the methods integrated in daily work. Furthermore, the results show that the intervention led to better collaboration between the family members of some participating families, something we would like to emphasise as an important factor to prevent burnout of the primary carers as well as social isolation and thereby to promote health (20, 21). It is hoped that increased collaboration between the different levels of the health services also will lead to earlier support, which is something Sørensen et al. (21) found to be important for maintaining the well-being of these families. Other studies (22–24) show that services are affected by the organisational structure and attitudes among health professionals about what makes a good service.
Methodological considerations The choice of methods was motivated by the lack of previous studies about the outcome of a RCT from the perspective of the healthcare professionals in dementia care. Qualitative research methods are helpful in providing knowledge of phenomena in areas where little is known (25). The present study used a purposive sample of 19 health professionals who had been involved in the intervention. These professionals came from different smaller and bigger municipalities; they were of different ages, from different formal educational backgrounds, and had been working within this field for some or many years, and some had experience of running groups. We hold the opinion that this purposive sample helps to validate the results (25). Thirteen informants were interviewed in focus groups, while six were interviewed individually. The reason for this primarily had to do with long distances between some of the participating municipalities. Also, as described previously, the authors found no obvious differences between the data collected individually and in groups. To contribute to trustworthiness, quotations have been presented in the text. In addition, data were analysed and discussed between the authors (26). Even though results of qualitative research designs cannot be generalised in a statistical sense, we argue that our results can be transferred to other contexts such as other groups of such families in other municipalities in Norway and elsewhere. The results may contribute to a
References 1 World Health Organization. Dementia: A Public Health Priority. 2012,
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better understanding, development and organisation of services for people with dementia and their families and thereby to promoting health in a more holistic way.
Conclusion The outcome of the study from the perspective of the healthcare professionals, who participated, revealed a need for more knowledge among health professionals concerning the situation of family carers for home-dwelling persons with dementia and especially that of the person with dementia. The study indicates that health professionals must be more aware of these families’ abilities to find their own solutions to their problems. Structured problem-solving seems to facilitate the families to use their resources to find solutions and over time hopefully adapt to the situation. Furthermore, it became clear that it was beneficial to offer structured individual as well as group-based interventions in the early stages of dementia and throughout the course of the disorder. The study also revealed a need for better collaboration between the specialist health services, GPs and health workers in the municipalities.
Acknowledgements The authors wish to thank the participants for sharing their experiences and Ageing and Health Norwegian Centre for Research, Education and Service Development and the Nordic School of Public Health NHV, Sweden, who supported the study.
Author contributions Aud Johannessen collected the data and was principally responsible for the analysis, though the process was continuously discussed with Ingun Ulstein and Lene Povlsen. All authors contributed to the drafting of the manuscript and the final critical revisions.
Ethical approval The study was approved in writing by the Regional Comittees for Health Research Ethics in Norway (REC South East) (S-09033b).
Funding There was no funding for the study.
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doi: 10.1111/scs.12107
Implementation of a multicomponent psychosocial programme for persons with dementia and their families in Norwegian municipalities: experiences from the perspective of healthcare professionals who performed the intervention Aud Johannessen RN, DrPH (Post Doc)1, Lene Povlsen RN, DrPH (Docent)2, Frøydis Bruvik RN (Doctoral Student)1 and Ingun Ulstein MD, PhD (Old-age Psychiatrist, Consultant)3 1
Ageing and Health, Norwegian Centre for Research, Education and Service Development, Vestfold Hospital Trust, Tønsberg, Norway, Nordic School of Public Health NHV, Gothenburg, Sweden and 3Old-Age Psychiatric Department, Oslo University Hospital, Asker, Norway
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Scand J Caring Sci; 2014; 28; 749–756 Implementation of a multicomponent psychosocial programme for persons with dementia and their families in Norwegian municipalities: experiences from the perspective of healthcare professionals who performed the intervention
Background: A randomised controlled intervention study was conducted in 17 Norwegian municipalities to provide home-dwelling people with dementia and their families with knowledge and skills to cope with the emerging problems and stresses of everyday life. It included training health professionals to carry out the intervention. Since little is known about possible benefits for health professionals of participating in such a study in terms of knowledge and change of practice as well as their views on whether the intervention is useful, we carried out this study. Aim: To investigate the outcome of the study from the perspective of the healthcare professionals who participated in the intervention. Method: Interviews with 19 health professionals were performed during 2012, using three focus groups and six individual interviews. The sample was purposive and included informants aged 34–61 years from 13 municipalities.
Introduction The prevalence of dementia is expected to increase dramatically in the entire world in the decades to come (1). It has been estimated that approximately 71 000 people Correspondence to: Aud Johannessen, Ageing and Health, Norwegian Centre for Research, Education and Service Development, Vestfold Hospital Trust, PO Box 2136 NO-3103 Tønsberg, Norway. E-mail: [email protected] © 2013 Nordic College of Caring Science
Results: Three main categories emerged: challenges, new knowledge and service development. The category challenges details the challenges connected with professionals’ participation in the intervention and how they dealt with them and is described in three subcategories. The category new knowledge demonstrates the knowledge the professionals achieved while conducting the intervention and is described through three subcategories. Service development presented how the informants’ experiences could contribute to improve the provision of care and details in one subcategory. Conclusion: The results revealed a need for more knowledge among health professionals about the situation of home-dwelling persons with dementia and their families. The study indicated that health professionals must be more aware of these persons’ abilities to find their own solutions to their problems. Structured individual interventions as well as group-based interventions in the early stages of dementia and throughout the course of the disorder seem beneficial. There is a need for better collaboration between the specialist health services, GPs and health workers in the municipalities. Keywords: dementia, family carers, improvement of care, community-based services, qualitative approach. Submitted 7 June 2013, Accepted 20 November 2013
in Norway suffer from dementia (2). Most live in their own homes with assistance from close family members until the later stages of the disorder (3). However, carers of persons with dementia are at risk of developing stressrelated health problems, caused by the burden of care and symptoms related to dementia (4). In addition, both the family carer and the person with dementia are at risk of social isolation and a reduced quality of life (5, 6). The need for help in everyday life increases gradually as the disease progresses (7). From a public health perspective, it is important to provide a variety of services 749
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for these families during the course of the disease, so as to maintain activities – thereby preventing social isolation and promoting health (6–8). Since the availability of suitable day care services in Norway does not match the number of people with dementia (9), there is a need to provide the families with the resources and skills they need to cope with the emerging problems and stresses of everyday life. The randomized controlled trial (RCT) ‘A psychosocial intervention programme for home-dwelling persons with dementia and their family carers’ was conducted in 17 municipalities all over Norway from 2009 to 2012. It aimed to evaluate a multicomponent programme for families with dementia and included training health professionals to recruit and carry out the baseline assessment of the participants and conducting the intervention. Apart from this study, there is currently little known about possible benefits for health professionals of participating in such a study in terms of knowledge and change of practice, as well as their views on whether the intervention is feasible and useful for persons with dementia and their carers.
The intervention programme The intervention lasted for 18 months and was based on feedback from family carers who had participated in a previous Norwegian psychosocial study (10, 11). It consisted of educating the primary family carers about the pathology of dementia, how to handle the symptoms, sorrow and losses associated with dementia and about legislation and their rights. The carers received five counselling sessions in which the stresses endured by the family and their resources were identified. The person with dementia was invited to join two meetings, whereas the extended family participated in one meeting. Furthermore, the carers were introduced to cognitive techniques such as structured problem-solving (10, 11). Thereafter, separate groups were offered for carers and for persons with dementia, four to eight people in each group. The first six meetings took place approximately every fortnight, while the two booster sessions took place 15 and 18 months after inclusion. A structured manual was developed, describing how to conduct each element of the intervention. In addition, the administrators of the participating municipalities had signed an agreement with the management of the study regarding economy, the use of local resources and mutual obligations to obtain a local base and support of the study.
Aim To investigate the outcome of the study from the perspective of the healthcare professionals who participated in the intervention.
Methods To explore the aim for this study, qualitative interviews were performed with healthcare professionals who had been involved in the recruitment and baseline assessment of the participants in the RCT study as well as in the intervention. The informants in the present study were collected purposively in order to strive for variation. A total of 18 woman and one man, aged 34–61 years, were interviewed in 2012 within a month after they had completed the intervention. The informants had worked in this field for between three and 25 years. Fifteen were nurses, three were occupational therapists, and one was a nursing assistant. Fourteen of them had participated in other educational programmes about the elderly and dementia; 10 had prior experience of running groups. They came from 13 urban and rural municipalities. The informants were contacted by telephone and asked to participate. Thirteen informants from municipalities located close to each other were divided into three focus groups, one group consisting of three informants, one group with four informants and one group with six members. The additional six interviews were conducted individually, because of long distance between the municipalities. An interview guide based on thematic questions was applied. It contained two main questions focusing on the informants’ experiences from participating in the study and how municipalities might organise future services for these families. Depending on their replies, the aspects and ideas raised by the informants led to further questions in order to obtain additional information. The interviews were carried out by author AJ. They lasted 20–70 minutes and were tape-recorded. Two focus groups were conducted in a neutral meeting room in a community office, and the third group met in a hotel room. The individual interviews took place at the informants’ work places at a time and date suitable for them. Three of these interviews were carried out by telephone. The recorded interviews were transcribed verbatim by a professional typist within a week after each interview. A quality control check of the transcripts was performed by listening to the tapes while reading the interviews. The transcribed 118 pages of data were analysed by manifest qualitative content analysis (12). Initially, the transcribed texts were read carefully several times to establish an overall impression. Since no substantial differences as regard contents or depth were identified between the data collected individually and from focus group discussions, respectively, the analysis was performed as a whole. Then, ‘meaning units’, that is, words and sentences expressing a central meaning, were identified and later on systematically condensed without changing the original meaning. At the second stage, the condensed units were labelled with a code stating their © 2013 Nordic College of Caring Science
Multicomponent programme for families content. In the third and final stage, categories and subcategories were created. These consisted of groups of codes according to the categories of the interviews. Special attention was paid to establishing clear differences between and similarities within codes and categories (12). Author AJ had principal responsibility for the analysis, but the process was continuously discussed with the co authors.
Ethics This study follows the ethical principles outlined in the Helsinki declaration (13) and by the Regional Committee for Ethics in Medical Research, Southern Norway. The informants were given oral and written information, and oral informed consent was collected before they were interviewed.
Results Three categories relating to the informants experiences emerged (Table 1). Each category includes a number of subcategories presenting different aspects of the informants’ expressions. Quotations from the interviews are presented to help the reader to evaluate the credibility of the results.
Challenges This category challenges details the informants’ perceptions of the many challenges their participation in the intervention presented and how they dealt with them and is described in three subcategories being equipped for the intervention, recruiting participants and conducting the programme. Being equipped for the intervention. It had been exciting and interesting to participate in the training prior to the intervention study, but challenging and even hard to learn the methods to be used. It had been a positive experience to participate in the training workshops ahead
Table 1 Categories and subcategories related to healthcare professionals experiences of a multicomponent programme for persons with dementia and their families Category
Subcategory
Challenges
Being equipped for the intervention Recruiting participants Conducting the programme About persons with dementia About the situation of family carers About the healthcare workers themselves Changing methods of practice
New knowledge
Service development
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of the intervention. However, some of the training could have taken place in smaller groups to make the participants feel freer to talk. Informants from municipalities where the subsequent recruitment process had been long and difficult said that education and training had been provided too early: The work-shops should have been organized in smaller groups, because then it is easier to get to know each other. The work-shop sessions came also far too early. When starting the first counselling meetings and group meetings, the informants did not feel that they were in control. In retrospect, they acknowledged that they had received enough training. We got enough training; it was alright, and I was glad that everything was not too detailed. You have to put up with uncertainty and find solutions that fit. I think it was a little bit like that, and we just had to jump into it. I liked that. Recruiting participants. The informants described different ways of recruiting participants. The idea was to include home-dwelling persons with mild-to-moderate dementia, but it was difficult to recruit persons who fulfilled these criteria. This led to a prolonged recruitment period and resulted in fewer participants than planned, exaggerated by dropouts and deaths before the intervention could start. Some carers had refused to participate, because of the randomisation, that is, they were not sure of being included in the intervention. According to some informants, recruitment was easier because the persons with dementia were included, and the groups for carers and patients took place at the same time and location: One of the reasons the carers were actually able to participate [in the groups] was that someone looked after the family member with dementia while they were in their own groups. Some of the carers could not get away, even for five minutes, and in this way they also got a break during the evening. The fact that memory clinics did not always inform the municipalities about new dementia cases presented an obstacle to recruitment. It appeared that although other departments in the municipality knew of families who could have been included, the professionals were not informed about the study. This made the informants aware of the need for better collaboration when running projects and establishing new services. Some had tried to contact eligible families through sources such as ‘courses for family carers’, newspapers, other families with a person with dementia, other services in the municipality and general practitioners (GPs). Recruitment was easier if health professionals had already established routines for getting in contact with these families. Sometimes family carers had been motivated to participate by the informants contacting them several times, explaining the study to them:
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A. Johannessen et al. Actually, the groups fit everyone, but of course there may be carers who feel that they do not want to sit in a group talking about their problems. We knew that these opinions existed, but when they [the carers] finally did join the group, they found it was in fact useful for them anyway.
Conducting the programme. The informants described various experiences of running the intervention. One challenge was how to keep the structure and use the required methods, which was easier to do during the counselling sessions than during the group meetings. The counselling sessions were time-consuming but important. Especially the counselling meeting with the extended family seemed to reduce conflicts and contribute to better collaboration within the family. This was described as an amazing experience: A daughter called me one day and said: I just have to tell you that I can now manage to take care of my mother. I know what to do, and now I just know I have to go there first and then my brother will follow on… Well, at last we have come to a very good agreement on how to do it. Some informants had experienced difficulties following the manual during the group meetings. On the one hand, the carers seemed to have a strong urge to express their feelings and frustrations and did not necessarily want to focus on how to solve problems, and it was perceived as difficult to stop them. It was easier for the informants to keep the structure and use the methods when they had realised that they had to take control over the group process to achieve the purpose of the meetings. On the other hand, it was a joy to see that carers were able to open up and include other participants in the dialogue and amazing to observe the brilliant suggestions they came up with to help each other. The biggest challenge had been the groups for persons with dementia. Because of the long recruitment period in many municipalities, most of the dementia patients had been in an advanced stage of the disease when the groups started. This resulted in difficulties discussing the themes. The informants had solved this problem by organising practical activities instead, primarily trying to give the participants a pleasant experience. They reported that the people in the earlier stages of the disease badly needed to express themselves and get to know more about dementia, both by speaking to the group leaders and by talking to the group. To be able to face the challenges, it was helpful to have two leaders in each group who could support each other and address problems associated with the heterogeneity of the groups. The group leaders said they needed supervision, especially in handling a high degree of sorrow and sadness or loyalty conflicts arising from the carers’ complaints about services.
The professionals received a lot of praise from the carers and persons with dementia, which stimulated them while they were facing the challenges. They had experienced lack of support and response from local colleagues, but had found it valuable to meet health professionals from other municipalities: To meet others who work with the same focus, and do what I do in my job, has been very inspiring. I think that I have met an incredible number of clever people during the meetings we had; well, I think it has just been very good.
New knowledge The new knowledge presents the knowledge the informants gained while conducting the intervention. The variation of this new knowledge is contained in the subcategories about persons with dementia, about the situation of family carers and about the healthcare workers themselves. About persons with dementia. Running the groups for persons with dementia had been an amazing experience for the informants who felt they had underestimated these persons’ insight into their situation: We learned that we have actually underestimated these people. We really got a wake-up call about that. No matter how mentally reduced they are, they are not necessarily totally gone//…..//That was surprising. It had come as a surprise that persons with dementia were able to ask questions about the disease and articulate their experiences of memory losses and anxiety about what to expect for the future. The informants had not been aware of this because they usually met patients in the later stages of the disease. During the study, they learned that like the family carers, persons with dementia needed someone to talk to, to be taken seriously and not being overlooked. I have heard several patients saying that they also wanted to talk. The unexpected but reasonable questions of the persons with dementia had made the informants aware of the importance of listening and talking to the persons with dementia. It was unexpected that the people with dementia had such a high level of caring for and safeguarding each other, even though they were at quite different stages of dementia. The persons with dementia also thought about their family carers’ burden day by day. The themes presented in the manual for group meetings of persons in the earlier and moderate stages of dementia were central for them, while the group meetings were merely nice social settings for those with reduced awareness of their cognitive dysfunction or in an advanced stage of the disorder. Still, even they quite © 2013 Nordic College of Caring Science
Multicomponent programme for families frequently managed to have a dialogue and were able to put their feelings into words. The informants said it was easier to start a dialogue when they had activities going on. It did not feel natural just to sit around a table talking. The informants learned to think about personalities and gender when planning activities and to accept that some participants were not able to take part in the whole activity process: They could talk and share experiences, something most of them seemed to be in need of. Some were talking a lot about their memory loss. Sometimes it could be difficult to follow the themes and not everyone was able to follow the conversation, so some might be listening very carefully and some starting to wander about. It seemed that everyone had a good time at the meetings. About the situation of family carers. The study had given the informants a great opportunity to understand the family carers’ situation better. The carers had a lot of knowledge and experiences to share – troublesome situations in everyday life that had been unknown to the professionals: A big surprise was the enormous grief and sorrow the carers had. I had not been aware of that earlier. It had come as a surprise that many carers found the groups more beneficial than the counselling sessions and that the professionals’ ratings of single sessions did not always correspond with those of the carers. The carers felt more comfortable in the groups when they knew that their family members with dementia were having a good time. It was amazing how fast the carers managed to establish confidence in each other, how they supported each other and to a high degree looked forward to the meetings. Even though some initially had difficulties talking about their situation, the carers just needed time to feel comfortable in the group. Some carers had even continued to meet after the group sessions had ended. It was a new experience to learn how differently dementia affected a family. Some carers had difficulty talking to their children about the situation, while others had found that family members reinforced their feelings of guilt. The counselling sessions with the extended family had therefore been beneficial in contributing to enhanced collaboration within the family due to a better understanding of the situation: The counselling meeting together with the extended family resulted in more contact between father and son. He meets with his father more frequently now and it has helped him. About the healthcare workers themselves. The structure and methods used and the possibility of spending more time with these families enhanced the informants’ knowledge © 2013 Nordic College of Caring Science
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about dementia and work that could be done with these families. The informants felt more comfortable and safe in their role and conducted the dialogue more sensitively, which made it easier to find ways to work even with families with which initially it had been difficult to collaborate. Spending time with the families, listening to them and providing them with confidence in their ability to find their own solutions, was perceived as both interesting and rewarding and contributed to the informants’ competence. Some reported that they had changed their views of family carers and the healthcare system after the project: Listening to what the carers actually think about health care workers and our system, how health care is organized, how they are met and what they actually want, what they need and what they are missing. This is something that has given me many ‘ah-ha’ experiences and taught me to think differently about services. The informants had learned to use new mapping tools, which they had found challenging at first but easier and useful after a while. They learned that it was not that easy to plan groups for persons with dementia within the framework of a RCT as they could not include group members with approximately the same degree of functional loss, something that would have been easier in ordinary practice. Another important effect of participating in the study was that they had learned the importance of listening and not only giving advice: Something I have really learned is to work with ‘my hands behind my back’ in the dialogue with carers. It is an art to just sit there quietly and let them carry on speaking… because they actually have the answers themselves.
Service development This category service development demonstrates how the informants’ experiences of the intervention could contribute to improving the care of and services for families of dementia patients. The variation of this service development is contained in one subcategory presented and described in changing methods of practice. Changing methods of practice. Municipalities should establish a variety of services such as counselling sessions, educational programmes and groups for these families, as they need support throughout the whole course of the disease. The informants saw the need for better collaboration between memory clinics, GPs and different municipality departments, something they had not been fully aware of before. When meeting families of persons with dementia in the early stages of the disease, it would be possible to act as a channel to provide them with information about the services. The study had provided knowledge about how to improve and individualise
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contact and support for families with a person with newly diagnosed dementia and to establish better collaboration: One thing that we actually have not talked about is that I now have much better contact with my collaborators, such as the specialist health care providers, the GPs and different departments in the municipality. The new methods learned as part of the study could contribute to offering more structured and comprehensive support and be useful in sorting out the reasons for symptoms linked to dementia and finding solutions to the problems. The informants suggested that a contact person from the municipality should be assigned to examine the family’s need for support when a person was diagnosed with dementia. The experience of the counselling and group sessions made it easier to prioritise this kind of service: When we offered the sessions we acquired the advantage of knowing these families in a better way and it was easier to be aware of their needs…// …//So it becomes easier to follow these families on a more regular basis, and it is a priority to continue the counselling sessions. There should be time and space for running groups for family carers and persons with dementia, and the informants wanted to try to implement this as part of the caring plan. Some felt it was natural to offer group meetings in addition to the already established ‘courses for family carers’ because they were in need of more support. In one municipality, the informants had applied for money in order to be able to continue the group meetings. Proposals for changes of the intervention design included more subsequent group meetings. The informants would continue with the same themes, but other themes that might be added were suggested, linked to aspects such as the function of guardians and economic support. Also, the themes about legislation and rights could be repeated. Moreover, it might be appropriate to include around six members in each group for carers, and if possible, offer separate groups for families with a person with dementia aged 65 and below, for adult children, and for spouses. Another suggestion was to contact the families on a regular basis: We saw how valuable the support was to these families. Even a telephone call was important in making the carers feel safe. Sometimes that was enough.
Discussion The main result of this study is the increased awareness among the participating health professionals about the ability of persons with dementia to express their needs and interest in achieving information about their condition. The obvious lack of knowledge about the capacity of persons with dementia may explain why there has
been a tendency to exclude them when developing services (14–17). The reason for this could be that services explicitly focusing on the persons with dementia have not been asked for, as health professionals in the municipalities usually meet the persons in the stages of the disorder when it has seemed more appropriate to offer care. The persons also are presumed not to be able to express their needs. As other studies (14, 15) have suggested, this new knowledge about the capacity and needs of the persons with dementia should result in the development of interventions for home-dwelling persons in the early stages of dementia, not only for care in the more advanced stages. Low threshold services such as educational programmes for carers as well as a wide range of activities and the possibility of meeting other people in the same situation may be beneficial for the person with dementia and their family carers. The informants seemed to be surprised by the high degree of sorrow and sadness expressed by the carers. These feelings could explain the carers’ reluctance to accept their family member’s mental impairment and be the reason for delayed referral to services in the municipalities. Also, the loyalty conflict some informants felt, because the participants had complained about the lack of services in the municipality, might be avoided by handing the responsibility for future interventions to, for example, the specialist health services or dementia organisations. Still, a person suffering from dementia will be the responsibility of local healthcare services. Furthermore, the need to establish a good and continuous dialogue and collaborate with persons with dementia and their family carers is important and in line with the Norwegian health and care legislation (18). The informants’ experiences of dialogue with these families may contribute to developing the intervention as they had suggested in the future. The informants said that the methods they had learned had enabled them to handle the challenges they met during the intervention in an appropriate and effective way. Their being a receptive interlocutor instead of giving advices permitted the carers to mention their own resources and find good solutions themselves, which many professionals saw as a good and new way of working. Still, they differed as to what extent they would continue to use the methods they had learned in their ordinary work. It therefore might be beneficial to educate healthcare professionals to help them use evidence-based methods that encompass the interaction between people in order to improve psychological and social functioning, including well-being, interpersonal relationship and daily living skills aiming to empower persons with dementia and their families’ as described in the INTERDEM manifesto (19). Some informants claimed that they lacked the support from local colleagues. This may explain why only a few professionals said that the study had resulted in a general © 2013 Nordic College of Caring Science
Multicomponent programme for families change in the provision of services for these families in the participating municipalities. Regular meetings or reports to the authorities in the participating municipalities could possibly have ensured that the study was better anchored locally and the methods integrated in daily work. Furthermore, the results show that the intervention led to better collaboration between the family members of some participating families, something we would like to emphasise as an important factor to prevent burnout of the primary carers as well as social isolation and thereby to promote health (20, 21). It is hoped that increased collaboration between the different levels of the health services also will lead to earlier support, which is something Sørensen et al. (21) found to be important for maintaining the well-being of these families. Other studies (22–24) show that services are affected by the organisational structure and attitudes among health professionals about what makes a good service.
Methodological considerations The choice of methods was motivated by the lack of previous studies about the outcome of a RCT from the perspective of the healthcare professionals in dementia care. Qualitative research methods are helpful in providing knowledge of phenomena in areas where little is known (25). The present study used a purposive sample of 19 health professionals who had been involved in the intervention. These professionals came from different smaller and bigger municipalities; they were of different ages, from different formal educational backgrounds, and had been working within this field for some or many years, and some had experience of running groups. We hold the opinion that this purposive sample helps to validate the results (25). Thirteen informants were interviewed in focus groups, while six were interviewed individually. The reason for this primarily had to do with long distances between some of the participating municipalities. Also, as described previously, the authors found no obvious differences between the data collected individually and in groups. To contribute to trustworthiness, quotations have been presented in the text. In addition, data were analysed and discussed between the authors (26). Even though results of qualitative research designs cannot be generalised in a statistical sense, we argue that our results can be transferred to other contexts such as other groups of such families in other municipalities in Norway and elsewhere. The results may contribute to a
References 1 World Health Organization. Dementia: A Public Health Priority. 2012,
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better understanding, development and organisation of services for people with dementia and their families and thereby to promoting health in a more holistic way.
Conclusion The outcome of the study from the perspective of the healthcare professionals, who participated, revealed a need for more knowledge among health professionals concerning the situation of family carers for home-dwelling persons with dementia and especially that of the person with dementia. The study indicates that health professionals must be more aware of these families’ abilities to find their own solutions to their problems. Structured problem-solving seems to facilitate the families to use their resources to find solutions and over time hopefully adapt to the situation. Furthermore, it became clear that it was beneficial to offer structured individual as well as group-based interventions in the early stages of dementia and throughout the course of the disorder. The study also revealed a need for better collaboration between the specialist health services, GPs and health workers in the municipalities.
Acknowledgements The authors wish to thank the participants for sharing their experiences and Ageing and Health Norwegian Centre for Research, Education and Service Development and the Nordic School of Public Health NHV, Sweden, who supported the study.
Author contributions Aud Johannessen collected the data and was principally responsible for the analysis, though the process was continuously discussed with Ingun Ulstein and Lene Povlsen. All authors contributed to the drafting of the manuscript and the final critical revisions.
Ethical approval The study was approved in writing by the Regional Comittees for Health Research Ethics in Norway (REC South East) (S-09033b).
Funding There was no funding for the study.
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