Peer Support for Carers

Abstract

Being a carer of someone with dementia can be rewarding and also challenging. Volunteer peer support schemes for carers are being introduced, little is known about either their impact on carers and volunteers or about volunteers' and carers' experiences. This study investigated peer volunteer and carer recipient experiences of a peer support service. Thematic analysis of 13 in-depth interviews with 9 carers and 4 peer volunteers revealed that peer support helped both carers and peer volunteers through the realization that they were “not alone” in their experiences and emotions. Additional carer benefits included opportunities to talk freely about difficult experiences and learning how others cope. Volunteers found their role rewarding, describing satisfaction from putting their own experiences to good use. These findings highlight the isolation and exclusion experienced by current and former carers of people with dementia and draw attention to the benefits of peer support for both the groups.

Background

Unpaid, informal carers (or caregivers as they are also known) provide much of the support for people with dementia. For example, in the United Kingdom, two-thirds of people with dementia live in the community supported by their families who are often the most important source of care. ¹ In the United States, carers provide approximately 80% of the care for people with Alzheimer’s disease and other dementias. ² Carer numbers are set to increase significantly, as worldwide populations age, making providing support for them increasingly important.

As highlighted in national strategies for dementia, caring for someone with dementia is often stressful, and carers may need support (eg, ^{3 - 5} ). Research shows that carers of people with dementia often have poorer physical and emotional health than carers of people with other long-term conditions (eg, ^{6 - 9} ).

Social isolation has been highlighted as a particular issue for these carers (eg, ^10,11 ). Caring in any chronic illness can also lead to family conflict in turn reducing support from family and friends. ¹² However, for carers of people with dementia, this may be exacerbated, as it can include loss of relationships with the cared for, reduced social networks because of the stigma of dementia, and limited opportunities to socialize. ¹³

Supporting Carers

A variety of psychosocial interventions aimed at reducing carer distress have been developed with varying results. ^{14 - 18} Inter-ventions include group and individual counseling, educational programs, problem-solving training, and teaching carers behavior management techniques. Overall, the consensus appears to be that these interventions can have a positive effect on carers, although whether group or individual measures are more effective remains unclear. Burgio et al ¹⁹ concluded that comprehensive, intensive, and individually tailored support is more likely to be effective than group support, while Etters et al ¹⁸ found that there was evidence that individual, multicomponent interventions can decrease carer burden and improve carer quality of life. Such interventions can also delay institutionalization of the cared for.

Schulz and Martire ¹⁵ looked at randomized,controlled trials of such interventions. They concluded that using a combination of strategies which targeted both the carer and the person with dementia led to significant improvements in carer burden, subjective well-being, satisfaction, and sometimes improvements in the care recipients’ symptoms. Higher intensity interventions had more impact than lower intensity interventions. However, carers are clearly not an homogenous group, and the impact of being a carer is influenced by a range of factors including carer personality, age, gender, and relationship with the person they care for. ²⁰ For example, it has been shown that when compared to adult children carers, spousal carers are more likely to experience negative health consequences, whilst some ethnic groups report more positive caregiving experiences and less caregiving-related distress than others. ²⁰ Therefore, given the diversity of carers and their situations, it is unlikely that all supportive interventions will have a positive impact on all carers, ¹⁷ making evaluation of their impact more challenging.

It has been argued that support may be more effective when provided by a “similar other.” This refers to someone who has successfully faced similar situations and can use their experiences to create an empathic relationship, support recipients’ emotional and practical needs, and offer hope for the future. ^21,22 The theoretical basis for the effectiveness of similar other relationships originates from social comparison theory, which posits that in crisis, people prefer to associate with others who have faced comparable situations. This allows them to compare situations and learn effective coping strategies. ²³

One-to-one peer support, sometimes called mentoring, where someone with caring experience supports a current carer, is one of the many varieties of support provided to carers of people with dementia. Although not always specified, these interventions generally appear to build on the concept of the “similar other” and are often based on experiential similarity. A peer supporter here is therefore a carer who has cared for someone with dementia and can offer guidance, empathic understanding, and help carers adjust to their experience. Evidence from such support for carers of people with conditions other than dementia suggests several benefits including help with problem solving, information sharing, encouragement, and feedback. ²⁴

The manner in which these carer peer support schemes in general operate and the impact they have on carers remains uncertain. ²⁵ Some investigators report positive outcomes, ^26,27 but others have identified little impact. ^12,28,29 These conflicting findings are possibly due to variations in service delivery and diversity in those supported. To date, little in-depth research has focused specifically on peer support for carers of people with dementia.

Volunteering

Peer support is usually provided by volunteers. Over the last decade, volunteering in general has received attention in the literature at least partially because of the recognition of its value to individuals and society. ³⁰ In general, volunteering has a positive impact on volunteers including physical and emotional health benefits. ³¹ Volunteers also report an increased sense of control, improved emotional well-being, and life satisfaction. ^{32 - 35} There is also evidence for increased longevity, ³⁶ particularly among older volunteers. ³⁷

However, little research has specifically investigated the experiences of peer volunteers supporting carers of people with dementia. An exception is a study by Pillemer et al ³⁸ who reported that volunteers (current and former dementia carers) acting as peer supporters helped develop awareness of their own caregiving strengths and limitations and gave them opportunities to come to terms with their experiences. Furthermore, in helping other carers, there could be mutual exchange of knowledge and experience. ³⁸

Purpose

As the number of people with dementia and their carers grows, international public investment in services for supporting these carers is growing. This makes it increasingly important to investigate the impact of support services on carer recipients and volunteers and to understand both carer and volunteer experiences. This research therefore aims to fill the gap in the available research by exploring the lived experiences and perceived impact of a peer support service from their perspectives. A qualitative approach in the interpretive tradition with semi-structured interviews was adopted, because little is known about the topic. This approach permitted an in-depth investigation of participants’ perceptions allowing the richness of their experiences to be explored. ³⁹

Methods

Participants and Consent

Participants were recruited from a peer support service developed in South London, United Kingdom. Carers receive one-to-one support from trained peer volunteers who are themselves former carers of people with dementia. Carers and volunteers meet on a regular basis (usually an hour weekly) over a limited duration of approximately 6 weeks, and volunteers receive monthly supervision from the service facilitator. In addition, the volunteers have telephone contact with the service facilitator after each peer support session.

During the study period, and on completion of their peer support, all carers were contacted by the service facilitator who gave carers the study information and invited them for an interview with the research team. To maximize the range of participants and their experiences, all 9 carers in receipt of peer support during the research period and their 4 volunteer peer supporters were invited to participate. It was stressed to both carers and volunteers that they were under no obligation to participate, and confidentiality was assured. Interviews were arranged at times and places convenient to participants.

Data Collection and Analysis

A researcher experienced in interviewing carers carried out the semi-structured interviews. A topic guide was employed ensuring important areas were covered and also allowing participants to describe the issues of importance to them. ⁴⁰ Topics covered were similar in both the groups and included perceptions of the benefits and downsides of peer support and the significance or otherwise of volunteers’ own caring experience. With participants’ written consent, interviews were digitally recorded and transcribed.

The research draws on ethnography ⁴¹ with the identification of recurrent themes. Analysis followed “conventional content analysis” ⁴² and began during data collection, allowing emerging themes to be explored. Two authors independently read and reread the transcripts to allow immersion in the data. Codes were then created by first highlighting the exact words representing key concepts. Notes of impressions and initial analyses were then made. The process continued, and codes were labeled to reflect and summarize the concepts. Labels often came directly from transcripts and made up the initial coding scheme. Codes were then sorted into groups of varying size to make meaningful clusters referred to here as themes. In order to enhance the quality of the analysis, the researchers attempted to identify any negative, “outlier,” or “deviant” cases among participants in terms of their experiences in peer support. ⁴³ Resultant analyses were then compared, and the few areas of difference were resolved by discussion.

Ethics Approval

A favorable ethical review was gained from the University Faculty Research Ethics Committee.

Findings

All volunteers and carers approached for the study agreed to participate. Interviews on average lasted under an hour and took place in participants’ homes. A total of 9 carers (mean age 64 years) and 4 volunteers (mean 66 years) were interviewed. All participants except 1 were female. Further demographic information is provided in Table 1.

Table 1.

Carer and Peer Volunteer Demographic Information.

	Carers (n = 9)	Peer volunteers (n = 4)
Mean age in years (range)	64 (49-80)	66 (45-76)
Gender
Female	8	4
Male	1	0
Ethnicity
White British	7	2
White other	2	1
Black British	0	1
Relationship to cared for
Spouse	4	3
Adult child	5	1

Themes

Themes identified during data analysis are grouped into 3 main sections: the perceived benefits of peer support, the volunteer–carer relationship, and the challenges and limitations of peer support.

Both carers and volunteers were overwhelmingly positive about peer support and identified benefits for both the participant groups. Benefits are divided into those relating to both carers and volunteers and those more specific to each group.

Benefits of Peer Support for Both Carers and Volunteers

Within this section we identified 3 main themes. These were: recognition that they were: not alone in their experiences, emotional support and release, and enjoyment of peer support.

“You are not alone”

Carers of people with dementia can feel very isolated but peer support helped reduce this. The finding that peer support benefitted carers and volunteers with the realization that they were not alone in their experiences and emotions was a recurrent and central underlying theme. This theme had several interconnected aspects. For carers, receiving peer support made them aware that many other carers have had similar experiences, often following similar emotional journeys. This shared journey includes both negative emotions, such as anger and guilt, and positive emotions. In that sense, it helped carers realize that they were “normal.” It was also striking that volunteers’ training and ongoing supervision also helped them understand that they were also not alone in their experiences. The volunteers often only fully realized this when they took on the peer support role, but importantly they could then convey this to the carers they supported. Knowing that the peer volunteer was “there for them” also reduced carers’ sense of isolation making them feel that there was someone available to talk to.

The realization that they were “normal” and their emotional responses were not unusual was frequently highlighted:

… it’s a perfectly normal, understandable reaction, that no one is weird or freaky that they feel like that. There was anger in there too but having someone say ‘Yeah I felt like that too’ helped. Carer B

Carers’ sense of difference and isolation was mentioned often, and peer support helped reduce this. Occasionally, peer support prompted comparisons with their peer volunteer who was frequently perceived as having had more difficult experiences. This too helped some carers.

It helps tremendously to just to talk to somebody and know that they’ve been through probably something worse than you… Because you always think ‘Oh I’m the only one who is suffering with this’ but you’re not, of course. And then there’s lots of worse cases… Because you are not so kind of wrapped up in your own, are you? And then you sort of think ‘Well lots of people suffer from this.’ Carer A

Meeting other former carers during training and learning about their experiences helped volunteers also realize that their experiences were not unusual.

Everybody (volunteers) talked quite a lot about their own experience, what they had done, how they had managed or what they had found difficult. There was a lot of, kind of, sharing our experiences really. Volunteer D

I was isolated with the situation, you know, and it taught me that a lot of people are experiencing other aspects of the same thing. Volunteer B

Many carers said the support helped them feel that there was someone “there for them.” Volunteers agreed:

It’s like travelling along the same road. I’ve already been on that road, so you meet somebody on the road again and you hold their hand and you travel along the road with them. Volunteer D

You’ve established a relationship with somebody … and as long as they know you’re there, that is the important thing … there is somebody out there that they can turn to if suddenly something should blow up. Volunteer A

Emotional Support and Release

Both carers and volunteers described emotional support and release gained from receiving and giving peer support. For carers, this offered a chance for them to talk freely about their current experiences to someone who understood; and for volunteers, it was about sharing past experiences. This 2-way nature of the process was frequently highlighted. Again the benefits for volunteers were perhaps unexpectedly prominent. For them, emotional support started with training and supervision but it also continued as providing peer support afforded opportunities for volunteers to share experiences never described to anyone. It was often cathartic.

… it released you knowing you were talking to someone else, so emotionally it strengthens … suddenly we were letting out things we had kept in. That was good, so from that emotional point of view, I think we helped each other. Volunteer D

Another volunteer described training as “almost therapeutic” because it helped come to terms with past difficult experiences:

You get to the stage where you think, ‘Well I can’t go on about this to everybody, I can’t put people who are my friends through it, so it is time to move on.’ Volunteer C

We talk about her feelings and about my feelings. And how it affects me… And also the feeling of, um, it’s like a living bereavement. Carer H

Enjoyment of Peer Support

Both carers and volunteers described peer support as enjoyable and emphasized the pleasure of social interaction. Volunteers’ visits were frequently anticipated with pleasure by both carers and volunteers. Some participants enjoyed the opportunity to talk about life outside caring.

… something for carers to look forward to at least once a week, to have a conversation… I think it breaks the monotony… just contact with the outside world. Volunteer C

I got used to chatting with her and having a laugh, which I hardly ever get. Carer D

The volunteers enjoyed meeting new people which sometimes reduced their own isolation:

… I do find it quite interesting just meeting with these people who perhaps have a different background, to me, slightly different lifestyle, different set of circumstances… it’s a privilege being invited into this kind of situation and people telling you about their difficulties, and their life, and what’s going on. Volunteer C

Frequently participants mentioned the pleasure in not focusing on the challenges of dementia but talking about “normal,” “everyday” things such as their families, rather than dementia.

It gets me out and … we used to talk about different things… we talked about our husbands… about our children… Volunteer B

Benefits Specifically for Carers

The benefits identified specifically for carers were support in managing their situations and gaining different perspectives.

Support in Managing Their Situations

With encouragement and affirmation, volunteers thought they helped carers manage their situations. This included increasing carers’ confidence in their role and allowing them to share their feelings. Carers also mentioned coping strategies learnt from volunteers. These were sometimes examples of how volunteers themselves or other carers had managed in similar situations. Mutual problem solving helped by volunteers’ experiences also took place. Again this reinforced the sense that carers were not alone.

For other carers, it was an opportunity to understand there were many different ways of approaching a problem or that there might be no perfect answer.

… she was able to show me that it is different for everybody and there is no perfect solution… you try something and then if it doesn’t work then you try something else. But she was able to offer constructive suggestions about a possible way of approaching a problem. Carer H

Carers explained that peer support helped them realize and accept that they were already doing a good job and that there were limits to what they could do.

So it’s good in that way because you realize that what you’re doing is good. Because I think you can feel a bit negative about things and are you doing enough? But you can only do so much. Carer F

Volunteers’ experiences meant they could help carers look ahead to the future.

I’ve helped somebody get stronger and also helping them see what might lie ahead but not pushing them, so that you can gently take them a step further because what lies ahead is sometimes difficult to see. Volunteer D

Peer support gave carers hope allowing them to see “light at the end of the tunnel.” Since volunteers were former carers, it helped them realize that these carers too could get through this difficult time.

She knew how it felt to be in my position. She’d faced the problems that I was facing… This was someone who had lived like I had through the illness, the good and the bad, you know, the tears and the happiness. Carer B

Gaining Different Perspectives

Peer support also helped carers cope by giving them different, sometimes more positive, perspectives of caring and by allowing them to appreciate and acknowledge the importance of their role. Both the groups emphasized the importance of helping carers recognize that the behavior of the person with dementia was caused by the disease and was neither the fault of the person with dementia nor the fault of the carer.

A carer explained how the volunteer had said:

You wouldn’t blame yourself for putting her in hospital, would you? You mustn’t blame yourself for that. Because you didn’t put her in there, her illness put her in there. Carer H

Sometimes changing perspectives involved volunteers encouraging carers to identify positive aspects of their experiences:

You become very enriched by the experience of looking after someone with dementia and I think that if you can help the carer to recognise that, as much as anything else, they are going to come away a much more enriched person at the end of it. Volunteer A

So it’s very much about talking about ‘You’d had a very nice day today’… So that they sort of try and see that there are good things as well. But it’s very hard. Volunteer D

Benefits Specifically for Volunteers

The themes identified here were emotional rewards, developing valuable skills, and putting their experiences to good use.

Emotional Rewards for Volunteers

This theme again highlights the 2-way nature of the benefits of peer support. Both carers and volunteer participants thought volunteers gained emotionally from their role. Benefits varied but included satisfaction from “giving something back” and putting their experiences to good use. For example, one carer suggested the volunteer’s love for her husband was confirmed by being a volunteer. It allowed to her to feel her experiences had not been in vain giving her “warmth and comfort.” Others felt it gave carers a sense of purpose or helped volunteers come to terms with their own experiences.

It’s not just a feeling of well-being – there’s a … satisfaction is a terrible word but then you see somebody you’re mentoring becoming stronger and being able to cope with more – even if they are not aware… well you feel you’ve done something worthwhile. Volunteer A

She may think I was better this week than last week, you know, I suppose that makes her feel better. Carer C

Other volunteers saw providing peer support as part of their recovery and helping them regain an identity as someone other than a carer.

It is more worthwhile doing this than, say, other volunteer things… I feel it is sort of more demanding and therefore more rewarding, and therefore it’s more worthwhile… I think it is part of my own recuperation in a funny kind of way, finding myself again. Volunteer C

In contrast this volunteer missed being a carer and the role allowed them to continue albeit differently:

I suppose I need to carry on caring, that’s the other thing that you miss, caring for people. Volunteer D

Developing Valuable Skills and Putting Their Experiences to Good Use

Volunteers felt that the role could sometimes allow them to put negative experiences of caring to good use but also permitted the development of previously undeveloped, possibly transferable skills. A volunteer explained how the training and the role had made her:

… much more sensitive to people, much more aware of people and I am also reading people’s communications more sharply. Volunteer A

This experience that I have had, perhaps it could be useful in some way… Having this experience, I thought I could do something here. Volunteer C

The development of skills that could be employed outside peer support is clearly important as it may allow these former carers to move onto other volunteering roles or to paid employment.

The Peer Supporter–Carer Relationship and Experiential Similarity

Carers and volunteers frequently emphasized that a key element of the peer volunteer–carer relationship was the shared experience of caring for someone with dementia, which allowed genuine understanding of carers’ situations. This was in contrast to friends and family who may not understand or might be bored by a carer who talked repeatedly about caring. Although volunteers’ and carers’ backgrounds and situations might differ, the emotional journey was perceived as shared, while the mutual sharing of experiences created a unique bond.

Somebody who is going through exactly similar process that you went through… or maybe on a slightly different journey … although their circumstances were very different, the emotional journey is very similar. Therefore I don’t think it matters terribly who you are matched with providing they are someone who loves and cares about the person… Then the emotional journey is very much the same. Volunteer A

And because she understands, because her husband had Alzheimer’s as well. So anything that I want to talk to her about she said ‘I know because I’ve done it…’ First of all I was ‘Sorry I’ve got to do this’, but she said ‘I know what it’s like, I’ve been through it.’ Carer E

Carers’ unique relationship and shared experiences with volunteers meant that peer support was seen as complementary to support provided by family, friends, and professionals. Carers repeatedly said they could talk to volunteers about things that they were unable to talk about elsewhere. This was associated with relief. Often they did not want to upset or bore others, but peer support gave them a forum where talking about being a carer was easier and more acceptable.

When I go out with my friends I don’t really talk about Mum that much because I just want to talk about rubbish and laugh and not talk about it. When you end up not talking about it and you bottle things up… and that is when you feel isolated. I do talk to my family, but it is not the same really. Carer F

The fact that the volunteers were not family members was often highlighted.

I talk to my daughter, but I don’t want to talk to her too much about it because I think she gets upset seeing me upset. If it’s somebody away from the family I think it’s easier sometimes. So I found that very, very helpful. Carer E

Their shared experiences meant also helped to create an emotional bond, where carers could be very open:

…. she thinks now we’ve known each other all our lives. That’s how she feels about it. So we really chat… and we talk freely about everything. Volunteer B

As relationships between volunteers and carers developed, they revealed more about themselves. As this trust and bond grew, it gave them confidence to be increasingly candid with each other and described difficult emotional experiences. Verbalizing their experiences meant carers revealed sensitive, often previously unspoken aspects of themselves and sometimes this made them feel vulnerable.

It was actually two-way with me and the volunteer because we both shared experiences. Because it makes you feel uncomfortable when you are giving away all your experiences, you know, whether people understand or not. It’s like, you know, betrays your confidence sometimes, so you feel embarrassed. Carer D

Perhaps surprisingly, some carers specifically mentioned they hoped they had helped volunteers.

So yes we used to listen to each other and she used to help me and hopefully I tried to help her. Just listening… just to get things off your chest and someone to listen to you and say ‘That must be bad.’ Carer G

Drawbacks, Challenges, and Limitations for Carers and Peer Volunteers

Specific attention during data analysis was given to identifying “deviant” or “outlier” cases, where participants did not appear to be reporting similar benefits or experiences. Efforts were also made to identify relationships between the participant demographics and the themes identified. However, there was considerable consistency among participants with few clear differences between them. In terms of its drawbacks, neither carers nor volunteers perceived many negative aspects of peer support, although occasionally participants appeared slightly ambivalent and questioned how much impact it was having. Sometimes these carers felt that very little could alter the fundamental difficulties of being a carer. For them peer support, although welcomed and offering brief pleasure, was insufficient. Indeed they could not think of any intervention that would have a significant effect. These carers often appeared to be struggling more with their situations and peer support offered short-lived benefit.

It is not going to help. I mean for a while you can laugh and share experiences and joke around. Just making each other laugh helps, just gives you a lift … but… whatever you say and whatever you do, it’s not going to get me out of the way I am feeling. Carer F

She was very nice, she is very kind and all that, but I don’t know how much it helps or how much it doesn’t… it is good to talk but I don’t know, it is, it is a very hard. It is a terribly, terribly hard thing to go through. Carer C

Another carer felt that the impact of peer support might be limited, because although there were commonalities in caring experiences, the diversity of carers’ reactions to caring and to peer support, restricted how much the volunteer could help.

You could share it to a certain extent but no one ever knows what you feel inside because everyone feels different, everyone copes differently. Carer D

Carers themselves were sometimes resistant to accepting outside help or found the process difficult, because the challenging nature of caring means that it can be easier to live “day-by-day.”

I think sometimes you don’t want to go for help because you think you can manage it yourself, and I’m one of those that think I can manage myself. I am one of those – I can do it, I can do it. I didn’t want no one from outside. Carer H

For volunteers although being a volunteer was largely viewed as a positive experience, sessions could arouse difficult emotions, and carers’ distress sometimes left them emotionally drained. The fear of rejection particularly before sessions started was mentioned, but no volunteers actually reported rejection by carers. Volunteers also stressed the need to have suitable gaps between sessions. Training was seen as difficult at times, and sometimes reminded volunteers of bad experiences. Similarly, some carers realized being a volunteer could be challenging, as volunteers may relive their own unpleasant experiences.

Because it’s that thinking ‘Do I really want to do this or is it just too painful?’ … Yeah, and listening to other people’s points of views and what happened to them…‘Because I think it’s important for the carers to know that that’s what they should expect that you only spend an hour with them. Because you know, it does take its toll … you’ve got to look at why you’re doing it, and if you’re doing it because you want friendship or …’ Volunteer D

When it came to the final sessions, some volunteers and carers said that the relationship seemed to end naturally within the suggested number of sessions, with the carer–volunteer pairs both feeling that there were no further benefits for the carer. However, other volunteers found ending the relationship difficult and thought the carer had felt the same:

It’s not very nice… And you feel a bit cut off because you don’t know what happened… you feel a bit left out. Volunteer B

Discussion

These findings have important implications for supporting carers. Although not without challenges, volunteer-provided peer support services can benefit both those receiving it and the volunteers. Our findings suggest that such support may complement professional and informal support and is distinctive because peer volunteers are uniquely placed to understand and empathize with current carers. Such “inside knowledge” can create a unique sense of mutual understanding that can only be gained by having been a carer of someone with dementia.

Carers of people with dementia frequently feel very isolated, but peer support helped reduce this. The value of peer support for carers is perceived to lie primarily in helping carers recognize they are not alone or unique in their experiences and emotions and again highlighting the importance of the volunteers’ experiences as a carer. Perhaps unexpectedly adopting the peer volunteer role meant volunteers also understood for the first time that their experiences were not unusual. The sense of isolation and difference described by participants here is perhaps exacerbated by the perceived stigma of dementia. ^44,45 This deserves further investigation particularly, as it still appeared to be an issue for the peer support volunteers all of whom had ceased their caring role.

There are similarities with the present findings and research around peer support in general. In line with other studies, participants emphasized the value of similarity in experiences, ^21,22,46 and participants here thought similarity in experiences and the shared emotional journey increased volunteers’ empathy with them. ³⁸ They also described the benefits of talking to someone who they felt really understood them and their experiences. ⁴⁶ This experiential similarity fostered open expression of carers’ feelings, ⁴⁷ while learning how others had coped was also valued. ^48,49 Like other researchers, we also found that support by volunteers who had successfully managed their caring experiences offered carers hope for the future. ^{21 - 22}

A strength of this research is the specific focus on carers of people with dementia allowing us to understand better this particularly challenging role. Furthermore, the study takes previous findings further by simultaneously investigating the impact on carers and on peer volunteers. This allowed us to identify and highlight the 2-way nature of the benefits of such support services as well as the complexities associated with mutual support. Being a peer volunteer was a very positive role, which volunteers felt helped them come to terms with their own experiences. There was also mutual exchange of coping strategies and knowledge with other volunteers. ³⁸ Like carers, the volunteers had a sense of emotional release by sharing their experiences with other volunteers and the carers. The role also gave them increased purpose ⁵⁰ and pleasure helping them “find themselves” again. When caring ends, carers can feel they have lost the identity they had as a carer, ⁵¹ and becoming a volunteer may help develop a new identity or continue caring albeit in a different role. This emphasis on the positive impact on both carers and volunteers is important, as it highlights the benefits for former carers, a frequently neglected group. ⁵²

It has been previously reported that although carers of people with dementia often have high levels of need, their uptake of services (eg respite) is generally low. ^53,54 The findings here may help elucidate this. For example, when promoting peer support to carers, perhaps emphasizing that it is different and complementary to other support and will strengthen and not reduce their caring role may mean they are more likely to accept the service. In addition, understanding they are “not alone” may help overcome the perceived stigma associated with dementia. ^44,45 This may, in turn, have wider implications making it easier for carers to be more open about their experiences and needs.

Earlier, largely quantitative research, investigating the impact of peer support, reported mixed findings. ^{12,26 - 28} However, using qualitative methods, we demonstrated how positively peer support was perceived by carers and volunteers. None of our participants hesitated to identify benefits. This disparity in findings using different methods deserves further attention, perhaps adopting mixed methods, as this approach can help researchers engage with the complexity of the environments where such interventions are offered. ⁵⁵

The benefits of volunteering for former carers, a frequently neglected group, were striking. Although former carers may not require as much potentially costly support as current carers, the death or institutionalization of the cared for person is associated with the loss of an important, satisfying role sometimes leaving a huge gap. ⁵² Being a peer volunteer may help fill this void. ⁵⁶ Additionally, our research supports the idea that the social isolation that develops because of limited opportunities to socialize and the stigma associated with dementia ¹³ may not improve when their cared for person dies. ⁵⁷ Indeed the carer may miss the social support provided by professionals. ⁵⁸ Being a peer volunteer may not only help to reduce this social isolation but also help to provide a sense of purpose and satisfaction.

When developing such services in the future, it may not always be possible to restrict volunteers to those with experience of caring for someone with dementia. Participants here often highlighted the value of volunteers’ caring experiences. It is difficult to know whether volunteers would be as positively perceived if they had experience of caring for someone with conditions other than dementia or perhaps had no personal caring experience. Clearly, volunteer training here is crucial, but further research should consider comparing the experiences and impacts of such a service on carers and on peer and nonpeer volunteer supporters. The volunteers’ personal characteristics such as empathy and sensitivity were often stressed by our participants, and it may be that appropriate training of volunteers with these personal characteristics could allow those without caring experiences to be successful volunteers. Our research supports earlier studies that have highlighted the perceived benefits of volunteering, ^31–35 and therefore, the inclusion of nonpeer supporters warrants further investigation. However, offering former carers the opportunity to support current carers was clearly successful here.

There are several potential limitations to this study. Carers were aware that the support was provided by unpaid volunteers, so they may have tried to make their appreciation of the service, especially clear and perhaps overemphasized the positive aspects of peer support. Volunteers may have also stressed the benefits of the service to help justify the time invested in training and supervision and because they found their role an emotionally charged one. However, it is unlikely that this explains all the benefits identified by the participants. Indeed most participants struggled to find any drawbacks to the scheme even when specifically asked about this.

This was a small qualitative study. However, the findings’ value lies in their depth and richness rather than quantity. For example, it is unlikely that quantitative investigations would have identified the importance of participants realizing that they are not alone in their experiences. The data produced were very rich, and although further interviews might have identified additional benefits, we are confident that the major themes were highlighted. If more volunteers had been interviewed, it might have permitted greater comparison between carer and volunteer participants’ perceptions and potentially between different ethnic and gender groups. However, the similarity in some aspects of participants’ perceptions was striking.

Conclusions

The challenges of caring for someone with dementia are well documented, but the isolation and exclusion of former carers have received little attention. Peer support schemes provided by volunteers, themselves former carers, may benefit both carers and volunteers. Carers and former carers are clearly very diverse, and further research may help understand who benefits the most from such services and how best to train volunteers for this valuable, rewarding role.