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This qualitative, exploratory study aimed to investigate the perception of benefits and the challenges of Peer Support services to carers of people with dementia. Four focus group interviews were conducted with volunteer Peer Supporters (n = 40)—all former carers—on their experience of supporting such carers. One overriding theme was of making the carers’ path smoother by giving the possibility for free time and reflection, and three themes summarised their experience: ‘filling the gap between health care and everyday life challenges’, ‘importance of mutual and unique experience based on skills and knowledge’ and ‘the importance of setting limits’. The findings showed that voluntary work is valuable to both carers and Peer Supporters. Peer Supporters’ experiences as former carers are valuable. They offer the opportunity to engage in mutually supportive relationships with carers based on shared experience and similar interests by contributing to a better management of everyday life. Being able to see positive changes in carers’ lives, guarding their privacy and providing them with free time were important for volunteers in gaining enjoyment and satisfaction over time. Enabling recovery and reflection might be crucial for carers to avoid burnout. How to recruit, support Peer Supporters and incorporate them in the formal healthcare system will be of great interest in the future.
What is known about this topic:
What this paper adds:
Unpaid informal carers (hereafter, carers) such as family and friends are a major source of support for people with dementia and are estimated to cover as much as 85%–90% of total societal costs (Prince, Comas-Herrera, Knapp, Guerchet, & Karagiannidou, 2016).
The carers of people with dementia have a multifaceted role with major loads and challenges in their daily lives, and they need unique kinds of support. This role can be physically and emotionally demanding, with carers having significantly increased risks of both physical and mental health problems, and reduced quality of life (Bleijlevens et al., 2015; Bremer et al., 2015; Chiao, Wu, & Hsiao, 2015; Dam, de Vugt, Klinkenberg, Verhey, & van Box tel, 2016; Keyes et al.., 2016).
Meta reviews (Huis in het Veld, Verkaik, Mistiaen, van Meijel, & Francke, 2015; Kwon, Ahn, Kim, & Park, 2017), systematic reviews (Chiao et al., 2015; Dam et al., 2016) and single studies from Norway (Bjørge, Kvaal, Småstuen, & Ulstein, 2017; Bruvik, Ulstein, Ranhoff, & Engedal, 2013; Johannessen, Povlsen, Bruvik, & Ulstein, 2014) have shown that psychoeducative and practical efforts have positive effect on carers’ burdens. In addition, a scoping review of 36 papers focusing on evidence of using Peer Support points out the importance of both social and emotional support (Carter, Monaghan, & Santin, 2019). Relatives need a combination of efforts adapted to their needs, where volunteers contribute with supportive tasks other than those the health services can provide (Dam et al., 2016; Pillemer & Suitor, 2002). Carers of people with dementia report benefits from being able to talk to former carers who are helping them to cope better with challenges and continue caring (Smith, Drennan, Mackenzie, & Greenwood, 2018; Smith & Greenwood, 2014).
Peer Supporters in general get satisfaction from putting their own experiences to good use (Greenwood, Habibi, Mackenzie, Drennan, & Easton, 2013). The role can be a source of joy and feeling good (Mabel Lie, Susan Baines, & Jane Wheelock, 2009). However, it has been pointed out that in order to go into a new role as Peer supporter, one must carefully consider timing according to their own process as former carers (Brooks, Farquharson, Burnell, & Charlesworth, 2014). A positive link between the volunteers’ duration of involvement and perceived well-being has been documented (Charlesworth et al., 2017; Kahana, Bhatta, Lovegreen, Kahana, & Midlarsky, 2013; Willis, Semple, & de Waal, 2018). Studies suggest that voluntary work in general can lead to healthcare savings by equipping those who receive help with coping mechanisms and by providing emotional support (Adang et al., 2009; Arksey, 2003; Banerjee & Wittenberg, 2009).
In several countries, trained former carers in dementia care serve as volunteer Peer Supporters for carers undertaking care for those with dementia (Alzheimer Scotland, 2019; Dementia Alliance International, 2019; Norwegian Health Association, 2019). There is limited knowledge about Peer Supporters’ experiences of being a volunteer Peer Supporter among carers to people with dementia. Thus, our aims were to investigate the perception of the benefits and challenges of the Peer Support Service to carers of people with dementia using the following research questions.
Participants (n = 40) were recruited from the Norwegian Health Association's yearly meeting for the Peer Supporters at a hotel in Norway. The third author was responsible for recruiting the participants and informed them about the purpose of the study, as well as data collection procedures by mail or post in September 2017. All the volunteers at the meeting attended the focus groups. The Norwegian Health association offers training, follow-up and personal mentoring to each Peer Supporter. The Peer Supporters have experience as carer, spouse or children of a person with dementia. All the Peer Supporters have attended a three-day training program consisting of many topics such as understanding the Peer Support role, how their support is a supplement to the formal primary care service, it is voluntary and based on the Peer Supporters own experiences. They learn about empathetic listening and encouragement, possible coping strategies, how to facilitate a conversation, meeting families in crisis and group management in support groups. The Norwegian Health Association Dementia help line counsellors are mentors and supervisors. They are responsible for the recruiting, the training program and the follow-up. The Peer Supporters are all available for telephone calls from other carers. Their contact details are available on the website of the Norwegian Health Association. Once a year all the Peer Supporters meet to share their experiences. Together they reflect on their experiences and learn from each other.
Four focus group interviews were conducted in different rooms. Focus groups enable the exploration of a range of opinions and create opportunities for participants to adjust opinions to others’ reflections and statements in the group (Krueger & Case y, 2009). The authors developed a question guide for the focus groups based on literature and experience. One is a nurse with expertise in dementia (author no. 3), an employee of the Norwegian Health Association and also serves as a supervisor for the Peer Supporters. The topic guide was designed to cover key areas with reference to the aims of the study. A copy of the topic guide is included in Appendix 1.
All interviews were voice recorded and transcribed verbatim in Norwegian and carefully translated in English in collaboration with a professional English speaker. The focus interviews took place on the second day at the hotel in November 2017. The participants did not know three of the interviewers but did know the nurse (author no. 3) from the Norwegian Health Association. The groups were assembled by the nurse and mixed according to gender, relationship, new or experienced Peer Supporter.
Prior to data collection, approval was obtained from the Norwegian Centre for Research Data (no. 56300). A letter of invitation to participate in the research was sent by the Norwegian Health Association to all the potential Peer Supporters who were going to attend the yearly meeting. In addition, they were also given information at the beginning of the meeting. Anonymity was ensured because no names were used in any part of the data collection. Socio-demographic data were reported carefully because of the very few members of the Peer Supporter Service in the National Health Association. An informed consent form was signed by those willing to participate in the focus groups.
A thematic analysis was undertaken to identify key themes guided by Braun and Clarke’s (2006) phases for analysis. In the first step, the authors read the focus group interviews in an active way, searching for meanings and patterns. The data were then coded and organised into meaningful groups by all authors. The codes were extracted from quotes about Peer Support experiences, and the organised groups were further sorted into sub themes and main themes (Table 1). We can never be entirely free of preconceptions that could influence our interpretation of the data. Therefore, to strengthen the validity, we addressed the criteria of trustworthiness, which include credibility, dependability, confirmability, transferability and authenticity (Guba, 1994). To fulfil this, all the authors made explicit their pre-understanding and existing knowledge about the context and carried out the analysis based on the following six steps of Braun and Clarke (2006).
Table 1. An example of the analysis (theme 1)
Data analysis identified one overriding theme: Making the path for carers smoother based on their own experience and the possibility for free time and reflection. Three themes were explored as follows (Table 2).
Table 2. Findings of the analysis
The following section considers each of the themes in more detail.
The informants compared what they were able to provide as Peer Supporters compared to what the healthcare service provided. They emphasised their unique contribution, which they perceived as better than services delivered by the traditional healthcare system.
Subtheme: Going the path together with the carers
The informants paraphrased their roles as ‘going the path together with the carers’ by emphasising the importance for the new carers to receive health information:
“…but the information path for the carers can be very long” (Focus group (FG) 1).
They also said:
“We do not answer medical questions” (FG 2).
“…but we need to guide the carers to find their own path” (FG 1).
The informants used their experience as having been carers themselves to guide the carers, as described by one of the informants:
“I think about when my parents lived and were diagnosed. The only information I received was at the hospital. They just said that they had been diagnosed and that I had to inform my other siblings, then. But still you just did not know what it was and how to search for more information, then I said, ‘Do you have something I can read?’ ‘No, you’ll just need to search online’, they said. I were terrified, I did not know what it was, I was wondering ‘Do they die of this?’ And then later on I thought that I will make a difference and help others to make the path easier for the other ones” (FG 1).
Subtheme: ‘Running a steeplechase in the dementia information race’
Being a carer is described by participants ‘like running a steeplechase in the dementia information race’ (FG 1). Carers experienced a lack of understanding among healthcare workers of the changes in the behaviour of a person with dementia. Our informants perceived that some of the behaviour and psychological symptoms of dementia is still associated with shame and is perceived as a private matter. Our informants requested a total package of information about having dementia in the family. They reported that carers only receive fragments of information from the healthcare system. Municipalities within the same health care region offer different services, and obtaining information about a particular dementia service in their own municipality is reported as tricky. Our informants exemplified this by sharing stories about guiding the carers as to who might be the best healthcare provider within their particular municipality. They even talked about how they consulted the healthcare professionals together with the carer, and guided the carers in writing complaints to the healthcare system. One informant also talked about frustrations caused by inadequate healthcare:
“Many also need to rework frustrations of the experience with health care workers’ handling and inadequate information, even it is large pressure about next to kin as being an important resource. It seems that they have not fully realized that carers need information and knowledge about different coping strategies……,and how to get relief to live as good as possible based on their situation” (FG 2).
Furthermore, they also highlighted their responsibility to influence politicians:
“We need to practice reality orientation of politicians” (FG 2).
“I perceive that many politicians do not want to see suffering—they do not have so much social conscience if they are not affected by it themselves” (FG 2).
The informants described the importance of mutual skills of a carer as:
“We are all novices of being carers of people suffering of dementia” (FG 2).
At the same time, the informants underlined the importance of knowledge among Peer Supporters about communication and the training course performed by the Norwegian Health Association.
Subtheme: Being in the same boat
The informants highlighted their unique skills from having been through a period as a carer of a person with dementia. One informant described these mutual skills as:
“A Peer Supporter is one who is in the same boat as the carer, so you have the shoes on, you know what they mean and they almost do not have to say something, because you sense it immediately that here’s someone who really knows what they are going through. It’s like everything else in life, you share special interests” (FG 1).
Another important skill is the ability to see the person with dementia in light of his or her life span and not as a ‘sick’ person. The experience as a carer also depends on the relationship with the person with dementia, whether it be a spouse, son, daughter or any other relationship (FG 3).
In addition to having some family relationship with the person with dementia, they suggested that a Peer Supporter should be of the same gender and age as the carer. They commented that this is difficult to fulfil in rural areas; moreover, how and where they meet the carer differs, depending on the possibility to meet more or less anonymously. Furthermore, in rural areas they are more or less Peer Supporters in different settings and also Peer Supporters for their friends. Therefore, they claimed that the Peer Supporter must be flexible regarding meeting places.
Subtheme: Skills, knowledge and being part of a Peer Supporter team
Our informants were concerned about how to use their own experience in a gentle way without being paternalistic. They did not talk directly about their own experiences and cases but used them to ask questions. These skills are partly autodidactic and partly learned through education as a member of the Peer Support Service in the Norwegian Health Association and in collaboration with other experienced Peer Supporters. They highlighted the importance of taking a certain time before they entered the Peer Support Services, as one said:
“I think there is a big difference between being a Peer Supporter who is still caring for a person with dementia, compared with those who are not. For myself, Mum is gone, and now I’ve got a little more distance. Then it will be a little different than if a spouse, mother or father still lives and you still are an active carer yourself or not” (FG 1).
They needed some time to process their own experience to be able to support others. In addition, knowledge about the disease was pointed out as being important:
“I believe in knowledge, extensive knowledge about more than pills. Understanding that the person has dementia is important, how to interact with someone who has dementia and how to live your own life and take care of oneself all over” (FG 3).
As Peer Supporters, they needed to enjoy meeting and talking with people by phone, face to face and also giving public addresses in dementia clubs, schools and so on. The informants emphasised the importance of overall skills in how to connect with people and using different communication methods such as:
“Recognize them (i.e., carers—authors) while they are talking. Do not interrupt, because most of the time they steer the conversation, as someone mentioned here, they need to talk, simply” (FG 4).
One informant who focused on the importance of being open minded added:
“I think we use common communication theory and guidance questions, just to open up if it’s something they do not say and have difficulty telling, so you often use open questions. They (i.e., carers—authors) say that ‘everything is so difficult, it’s so terribly difficult’ but you cannot get what’s hard. Then I ask, ‘Can you say something about what’s hard?’ It’s important to talk, but it’s just as important to listen” (FG 4).
The informants highly recommended the training course and guidance from a dementia nurse in the National Health Association (2019). These efforts were described as providing a possibility to learn more, to gain valuable support and to form a forum with other Peer Supporters and the dementia nurses to search for guidance and debriefing in difficult cases.
Setting limits is necessary to be able to remain a Peer Supporter over time and for the carer to stay healthy. Trustworthiness seems to be a common feature for both the Peer Supporter and the carer.
Subtheme: Guarding privacy
With their own experience as a carer, our informants explained how confiding to the carers was a moral commitment, while still needing to guard their own privacy. This made the Peer Supporter less risky to confide in than others, including healthcare workers, for example in cases involving violence and sexual acts performed by the person with dementia such as:
“It’s also the case that someone might tell you ‘my man hits me and he has come quite far in his disease’ and so on. What do you do then as a Peer Supporter? Someone I can contact? So, you have to try to convince this person as you talk to them on the phone that they actually need help The carers might say: ‘yes, but shall I begin to reveal to health personnel that my husband has begun to hit me?’” (FG 1).
Therefore, during conversations with the carers, the Peer Supporters emphasised the necessity of seeking treatment for the person with dementia. Furthermore, they needed to take care of themselves and not only care for the person with dementia. Thus, the informants highlighted how hard it was to tell about these episodes of violence while shielding the private life of the person with dementia.
As Peer Supporters, the informants reported that they came to know the carers very well. However, developing a friendship with those who contacted them was rare. One of them described how to keep a distance and maintain privacy by using caution regarding meeting places:
“I try to keep a little distance and set some limits. If they say, ‘Can I come to you?’ I suggest we can meet for example at the volunteer centre. Because we should be a bit careful about talking with them, … you can also be a Peer Supporter for a friend, but I think that some rules need to be set. Otherwise it may get too close” (FG 3).
There was also one example of a carer who considered the Peer Support Service as a public service and expected to have a legal right to phone the Peer Supporter at any time—on Sunday mornings and even on Christmas Eve. Thus, privacy is needed and one participant expressed it like this:
“And if there should be a phone and it is inappropriate, then I’ll tell or ask if they have the opportunity to call again a little later, …... And if I feel that it is being very ‘preachy’ to the other, I try to get along with what I’m doing and prioritize it. So that’s just the few times I have to prioritize my time” (FG 3).
Subtheme: The need for free time and reflection
The informants described the possibility of making a difference and feeling ‘paid back’ (FG 3) and ‘adding something to one's life’ (FG 2) by giving the carers a possibility for free time and reflection, that they possibly lacked themselves, as a part of the motivation to stay in the Peer Supporter Service. They described the experiences like this:
“When I run a conversational groups for spouses, they feel that they have a little break, that is, time for themselves” (FG 3).
At the same time, they clarified their own need for free time and for setting limits and having breaks during their voluntary work. One said that conversation with the carer is sometimes very exhausting and the informant needed free time:
“I feel that they are calling from both the north and the south of the country at the same time as I meet carers on the street at home: they found me online. And I have a conversation group with carers, and after the group meetings they make contact and ask if they can talk with me. Therefore, after the meetings I am very exhausted because it’s very intense and very demanding, the stories they have to tell” (FG 4).
This point was underlined by another:
“I have noticed that if I have had a phone call lasting two hours, you are lost afterward” (FG 1).
Regarding the informants’ own need for free time and reflection, one said:
“I cannot respond to everything, but I can get answers to most; however, in some cases they had to contact others and I referred them to someone else” (FG 4).
In addition, regarding the expression of emotions, the informant highly recommended making distinctions between their own and the carer's feelings:
“Yes, you have to be prepared for everything, and then you have to tighten up so that your own feelings do not take over. It is important….I have to take care of my own feelings and really process them, I move forward and I am able to make sound, independent decisions and communicate with others who are in an emotional situation that I can recognize and respond to. I have to accept the feeling, cope with my own feelings and not transfer them to others. Being emotionally clear is important for becoming a good person. I have to see the other person and think that he or she is an expert in their own life, but might need someone to talk with about thoughts and feelings” (FG 2).
Free time was seen as enabling them to regain power and to reflect upon their own experiences and to cope with their feelings as former carers.
This study investigates the experiences of former carers as Peer Supporters and the importance the features of this service have on the everyday lives of carers to people with dementia. The overall results highlighted that the voluntary Peer Supporter experienced a number of benefits, presumably also the carer, based on their shared experiences. This supports previous research, which focussed on the importance of carers and volunteers developing relationships based on reciprocity and experiential similarity (Charlesworth et al., 2017; Keyes et al., 2016; Smith et al., 2018).
Being an informal carer is complex and demanding both emotionally and physically (Burr, Han, & Tavares, 2016; Greenwood et al., 2013; Mabel Lie, Baines, & Wheelock, 2009; Pillemer & Suitor, 2002; Willis et al., 2018). In our study, this was displayed by carers sharing sensitive or ‘difficult’ information with the Peer Supporter based on the trustworthiness of experience, similarity and shared interests in dementia. The Peer Support Service offers both Peer Supporters and probably also carers a greater chance of reaping benefits regarding reciprocal emotional and social support.
The informants claimed that the formal healthcare system failed to support carers. This is in line with the findings of Bjørge et al. (2017) who reported that the formal healthcare system did not support the carer's emotional needs. Dam et al. (2016) pointed out that relatives need a multi-component social support network adapted to their needs. In light of this knowledge, our informants suggested that the Peer Supporter, who knows the challenges, has a necessary mission in filling the gap between carers’ everyday needs and what the formal healthcare system is able to offer. Considering the increasing numbers of people with dementia (Avidor, Ayalon, Palgi, & Bodner, 2017), the healthcare system needs to develop more knowledge about and efforts tailored to support carers’ needs during the progression of dementia. Healthcare professionals will benefit from collaborating with volunteers because they have valuable experiences that can help contribute to the development of knowledge in investigating and closing the gap between the carers’ needs and the current offers from the healthcare system.
A Norwegian study asked whether volunteers are equipped to take on such advanced health problems (Tingvold & Olsvold, 2018). Our informants emphasised the invaluable combination of personal experience, knowledge, the possibility of meeting other Peer Supporters and seeking supervision from a specialist nurse in dementia care. The Norwegian Health Association requires that Peer Supporters need to be trained, attend yearly training courses and seek supervision by specialist dementia nurses (Norwegian Health Association, 2019). However, more rigorous education might be considered such as Charlesworth and colleagues` (2018) model with ‘awareness course before being matched’ with a carer (p1219).
The informants claimed that they interpreted that the carers benefitted from the emotional and social support, as well as increasing their coping ability. These findings are important, as the satisfaction levels of volunteers are closely linked to their experience of positive results from their volunteering (Greenwood et al., 2013; Matsuba, Hart, & Atkins, 2007). Consequently, if volunteers do not observe any positive differences they are making to carers’ lives, their sense of satisfaction and enjoyment may be diminished. However, this and other studies (Burr et al., 2016; Charlesworth et al., 2017; Jenkinson et al., 2013; Kahana et al., 2013; Lie et al., 2009) have shown there to be a number of consistently reported mental and physical health benefits to volunteering generally, such as joy, having fun and feeling good in life. Nevertheless, our findings that there is a lack of understanding of the negative impacts on volunteers is worthy of further research. Greenwood et al. (2013) reported volunteers` challenges including reliving difficult experiences such as shame, social isolation, fear of rejection by carers and not getting relief. Our study has demonstrated that similar experiences were perceived as key components in the development of mutually beneficial relationships between carers and volunteers. In addition, our findings support the proposal from Smith et al. (2018), who called for future research on ways of reducing potential burdens on volunteers and on exploring the impact of volunteering, specifically for former carers of people with dementia. In addition, based on our study, exploring how to transfer the Peer Supporters’ knowledge to professional healthcare workers is warranted.
Our findings support the need to strengthen healthcare information about voluntary work in dementia care. We suggest that the healthcare system should give information regularly about the Peer Supporter Services and other voluntary work in dementia care within the municipalities.
There were several potential limitations to this exploratory study. First, the volunteers might have overemphasised the benefits for themselves and the carers as a way of justifying their time and emotional investment in the role. In addition, they might have been concerned that discussing too many negatives to their role could reflect badly on their provider organisation and the possibility of the Peer Support Service being withdrawn. However, it is unlikely that this explains all the perceived benefits reported by volunteers. Furthermore, many were open about the drawbacks associated with their role. The value of our findings lies in the expanded discussions in focus groups, which gave depth and richness rather than quantity. However, group allocation might of course have influenced the ‘talk’ within the group, even if the themes seemed to be relevant across all groups.
Furthermore, the volunteers represented different geographical regions, yielding a wider range of perspectives on the important determinants for the Peer Support experiences. The data produced were very rich, although further interviews with the carers might have strengthened our data and even arrived at other findings and conclusions.
Peer Supporters perceived voluntary work as valuable to the carers, society at large and to themselves. Peer Supporters offer supportive relationships with carers based on shared experiences. Their experiences as former carers are regarded as valuable and contribute to a better management of everyday life as well as better mental health for the carers. Being able to see positive changes in carers’ lives and guarding their privacy and free time were important for volunteers to gain enjoyment and satisfaction from their role over time. Determining ways to recruit and support Peer Supporters, and how to incorporate them in the formal healthcare system will be of great interest in the future.
The authors wish to thank all the participants, the Norwegian Health Association and Oslo Metropolitan University (OsloMet).
The authors declare no potential conflicts of interest with respect to the research, authorship and/or publication of this article.