Health and Social Care in the Community (2015) 23(5), 550–558

doi: 10.1111/hsc.12163

Social participation and family carers of people living with dementia in Australia , Michael Bauer BA DipEd MGeront PhD RN ND1, Deirdre Fetherstonhaugh Dip Appl 1 2 Sci (Nursing) Renal Cert BA MA PhD RN , Wendy Moyle DipAppSci BN MHSc PhD RN , Laura Tarzia BCA GradDipArts(Socio) 1 1 PGradDipArts(Socio) PhD and Linda McAuliffe BBSc (Hons) MPsych MAPS

Rhonda Nay

BA MLitt PhD RN

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1

Australian Centre for Evidence Based Aged Care (ACEBAC), Faculty of Health Sciences, La Trobe University, Melbourne, Victoria, Australia and 2Griffith Health Institute, Griffith University, Brisbane, Queensland, Australia Accepted for publication 19 September 2014

Correspondence Linda McAuliffe Australian Centre for Evidence Based Aged Care (ACEBAC) Faculty of Health Sciences La Trobe University Melbourne, Victoria 3086, Australia E-mail: [email protected]

What is known about this topic

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Social participation is essential to well-being. Family carers of people living with dementia experience social exclusion. It remains unclear what social participation actually means to this population.

What this paper adds

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This paper illuminates the meaning and experience of social participation for family carers of people living with dementia. Social participation of carers can be understood as a process of adaptation, with some carers experiencing greater adaptation than others. Social participation can be supported by respecting the agency of carers and enhancing opportunities for their active engagement.

Abstract This paper reports on a study exploring the experiences and meaning of social participation for family carers of people living with dementia. Participants were 33 family carers (17 spouses and 16 adult children) of older adults diagnosed with dementia (any stage or type) who responded to advertisements by the national Alzheimer’s association, Alzheimer’s Australia. Data were collected through semi-structured face-to-face and/or telephone interviews using an interview guide, which included prompts such as ‘Tell me about what social participation means to you’, and ‘How did this change. . .’. The methods of grounded theory were drawn upon to guide sampling and analysis of data, which continued until theoretical saturation was achieved and occurred over the period September 2011 to March 2012. Data arising from the interviews were analysed line-by-line and coded and categorised using the constant comparative method, with codes clustered into themes and with abstraction from the themes to arrive at the core process. The core category arising from the data was adaptation, which encompassed four main themes: autonomy to choose; the impact of care-giving; employing strategies; and establishing meaningful connections. Carers went through a process whereby the ways in which they had previously participated socially were compromised, which often prompted an exploration of new ways in which to remain socially engaged. Keywords: carers, dementia, grounded theory, social participation, well-being

Introduction Defining social participation It is generally agreed that social participation is a key element of wellbeing across the lifespan (Levasseur et al. 2010). Its absence can contribute to stress and feelings of isolation in the individual, as well as social discord (Taket et al. 2009). However, the meaning of social participation has not been well defined, despite a growing interest in the concept across a range of disciplines. Theoretically, social participation is closely linked with the related concepts of social inclusion/exclusion, social connectedness and social

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capital, and, although there are important differences between these terms, they are sometimes used interchangeably. As Levasseur et al. (2010, p.2142) have noted, this definitional inconsistency is problematic, and can cause ‘communication difficulties between those using the concept [and] problems in the . . . measure[ment] of social participation’. As much of the literature, as well as current policy frameworks, address social inclusion and exclusion rather than participation, it is important to recognise the similarities and differences between these concepts. Social inclusion is often used to describe the ways in which individuals feel that they belong, or are connected to, a particular group, organisation or network (Crisp 2010). Taket et al. (2009, p.4) claim that social inclusion incorporates ‘acceptance, opportunity, equity, justice, citizenship, expression and validation’, while exclusion incorporates ‘marginalising, silencing, rejecting, isolating, segregating and disenfranchising’. Social participation, on the other hand, focuses on ‘the person’s involvement in activities that provide interaction with others in society or the community’ (Levasseur et al. 2010, p.2146). It involves ‘acts of receiving goods (love, help, etc.) from others, as well as providing them’ (Bukov et al. 2002, p.510). In other words, social participation represents a more active engagement, where the individual is not only accepted as a member of a particular group but is also involved with, and contributes to it. The interactions between social inclusion, social exclusion and social participation are quite complex. For example, there is a body of research examining the ways in which factors such as poverty (Gallie et al. 2003), unemployment (Kieselbach 2003), minority status (Chau & Yu 2001) and disability (Owens 2009) can lead to social exclusion, the consequences of which are reduced opportunities for social participation. At the same time, a lack of social participation may cause an individual to become socially excluded (Burchardt et al. 2002), and thus the cycle is reproduced. To assist in the development of a common understanding, a roundtable involving social participation experts arrived at the following consensus definition of social participation: . . .the individual’s human right to experience self-determined modes of engagement in all aspects of society which, by implication, encompass work, health, education, social and personal relationships. In this context, social inclusion can be understood as the societal responsibility to provide the necessary conditions that enable people to experience selfdetermined modes of social participation. (Institute for Social Participation 2009, p. 35) © 2014 John Wiley & Sons Ltd

This definition recognises an individual’s agency, societal responsibility and mutual reciprocity. But does this definition reflect the ‘real world’ of carers of people with dementia? Social participation and family carers of people with dementia Although many family carers have been found to experience symptoms of stress, isolation and social exclusion, carers of people with dementia tend to experience these negative effects to a greater extent. Dementia carers spend more hours per week caring, assist with more activities of daily living, and are more negatively affected by care-giving in terms of impacts on employment, finances, family, psychological and physical health, and leisure time (Ory et al. 1999, Brodaty & Green 2002, Moise et al. 2004). Spousal carers of people with dementia become isolated from family members and friends because they are reluctant to leave their spouses at home alone or, concomitantly, to take them out (Drentea et al. 2006), often due to changes in behaviour and/or personality that can accompany the onset of dementia (e.g. repetitive behaviour, verbal or physical aggression). Brækhus et al. (1998) confirmed that this loss of social life was a strong contributor to spousal carer stress. This is also true of people who are caring for parents with dementia (Dura et al. 1991). More recently, Daly et al. (2013, p.5) discussed the particular difficulties of ‘sustaining place’ when one is caring for a person with dementia. Participants in their study described being ‘whittled to the core’, opportunities for social contact were reduced, and supports withdrew or abandoned them due to ‘dementia-related ignorance and fear, stigma, and . . . people not knowing what to do’. Despite these challenges, the literature overwhelmingly suggests that support from social networks and social participation are highly valued by carers of people with dementia (Hirst 2005, Al-Janabi et al. 2008, Dow et al. 2011). Not only do positive social interactions ‘bolster carer resilience to adverse quality of life outcomes’ (Perkins & LaMartin 2012, p.54), but they also reinforce the identity of the carer as a citizen, and protect against becoming a ‘non-person’ (Williams 2012). It should be noted, however, that social participation may be a negative experience for some. For example, Lilly et al. (2003) found that only slightly more than 50% of the carers in their study spoke positively of interactions with friends. At times, friends could be dismissive, lack understanding about dementia, or grow tired of hearing about the carer’s problems (Lilly et al. 2003). For this reason, dementia support networks composed of other carers can play 551

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an important role in providing opportunities for social participation (Dow et al. 2011, Daly et al. 2013). Aims Although it is well established that social participation is important to carers of people with dementia, a lack of understanding remains as to what social participation actually means to this population. The aim of this study was to address this gap by illuminating the descriptions and experiences of social participation as related by family carers of people with dementia.

Methods Design Semi-structured face-to-face and/or telephone interviews were conducted with family carers of older adults with dementia to obtain their views on what social participation means to them. The study drew upon grounded theory methods (Glaser & Strauss 1967) to guide sampling and analysis of data. Participants Participants were family carers (spouses and adult children) of community-dwelling older people (aged 65 and over) with a dementia (any stage) and living in metropolitan, rural and regional areas of Australia. Participants were recruited through the national Alzheimer’s association, Alzheimer’s Australia. To be eligible for inclusion, participants were required to be the day-to-day carer of the person with dementia; capable of understanding the project information and providing consent; and able to converse in English sufficiently to complete the research interview. Data collection An expert reference group consisting of members from the Consumer Dementia Research Network contributed to the development of recruitment strategies. Recruitment involved advertising on the Alzheimer’s Australia website and in the newsletters of two Australian state-based Alzheimer’s Associations (Victoria and Queensland). The study information sheet and consent form were posted to carers who contacted the research team expressing interest in the study. Participants were offered the choice of either a faceto-face or telephone interview. Interviews were conducted between September 2011 and March 2012. Interviews were semi-structured and guided by an interview prompt sheet. Interview questions included 552

‘Tell me about what social participation means to you’ and ‘How did this change. . .’. Data collection continued until no new issues emerged. All interviews were digitally recorded and transcribed verbatim. Ethics approval for the study was granted by the two universities involved in the research (La Trobe University approval number FHEC11/123; Griffith University approval number NRS/04/11/HREC). Data analysis This study used the methods of grounded theory (Glaser & Strauss 1967) to guide sampling and analysis of data. This involved collecting and analysing data in parallel, and continuing until no new themes emerged from the analysis (theoretical saturation). The data from transcribed interviews were coded and categorised using the constant comparative method. Analysis involved reading the full interview transcript; performing a line-by-line analysis and comparison with and between transcripts; identification of similar and dissimilar codes; clustering of codes into themes; re-reading the full transcripts and checking the credibility of themes; and abstraction from themes to arrive at the core process. To encourage rigour in the findings, interview transcripts were validated for authenticity by a subsample of participants (Strauss & Corbin 1998).

Results Demographic characteristics of the study participants are shown in Table 1. Carers were mostly female (82%) and lived in metropolitan areas (74%), with all carers aged 50 years or older. Roughly, equal numbers of spouses (52%) and child/child-in-law (48%) carers participated in the study. The core category arising from the data was adaptation. There was a shared view that social participation had changed for the carer (and care recipient) upon their relative’s diagnosis of dementia. Carers underwent a process whereby their freedom to choose when and in what ways they socially participated was compromised; this often (but not always) led to the implementation of strategies for continued social participation as enjoyed previously, as well as a redefinition of the term and creation of new meaning. Adaptation encompassed four main themes, which will be used to structure the presentation of the findings: Theme 1 – Autonomy to choose when, in what ways and for what reasons to socially participate Theme 2 – The impact of dementia care-giving on social participation © 2014 John Wiley & Sons Ltd

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Table 1 Demographic characteristics of study participants (N = 33) Characteristic Gender Female Male Age 50–59 60–69 70–79 80+ Relationship with person with dementia Spouse Child/child-in-law Location Metropolitan Rural/Regional

n (%)*

27 (82) 6 (18) 12 9 5 4

(40) (30) (17) (13)

17 (52) 16 (48) 17 (74) 6 (26)

*Percentages displayed are adjusted to account for missing data.

Theme 3 – Employing strategies to maximise desired social participation Theme 4 – Establishing new meaningful connections, activities, attitudes, skills and knowledge

The themes are evidenced with participant excerpts from interviews. It is important to note that while many carers experienced a linear progression through these themes, for others the process of adaptation did not extend beyond the first two themes presented. Autonomy to choose when, in what ways and for what reasons to socially participate The carers all talked about social participation as involving the capacity to choose how, when, where and why they participated. Further, social participation was found to have distinct but overlapping components. Importantly, it was constituted by activities, but perhaps more importantly by what purpose those activities served and the potential they held for meaningful connections. Activities of numerous types were described as ways in which people participated in society. The activities were usually (but not always) with other people in face-to-face situations. Typically, social participation referred to such activities as taking walks, going to the movies, playing sport and enjoying holidays. Social participation was also described as enjoying a quiet dinner with a partner, or having time for oneself in which to work, be educated, read or simply get one’s thoughts and plans in some order: Well, basically, in the past I was travelling more, I was able to go away, I was able to study, I was an actively published © 2014 John Wiley & Sons Ltd

writer and I haven’t been doing a lot of published written stuff lately or in the last 10 years or so. I would go and take lessons in ballroom dancing, I would go swimming and snorkelling and fishing and lots of things like that. (Female adult child carer, aged 63 years)

Strong constituents of social participation prior to their relative developing dementia were spontaneity and planning. It was easy to simply make up one’s mind and go out when one felt the urge. Planning could be undertaken with some confidence that the plans would indeed be achieved. Travel to international destinations or the local shopping centre, visiting children or friends, attending a function or going to a doctor’s appointment – all require planning of some nature that was relatively easy to execute previously: Well I could go to events, you know? I could go to music concerts, I could go without having to plan everything ahead . . . yeah, I could take a holiday whenever I wanted. Now it’s becoming such a big thing you know, to organise a holiday. (Female adult child carer, non-English-speaking background, aged 51 years)

The impact of dementia on the social participation of carers Many carers expressed a major loss of social participation since becoming a carer. Frequency of participation was reduced, and restrictions introduced in terms of the types of activities in which carers could continue to socially participate. This loss caused carers to reflect on how important social participation was for them: I see the need for it a lot more because it’s not easy for me to actually do what I’d like to do, to be able to go places and do things. (Female adult child carer, non-English-speaking background, aged 51 years) I wanted to do a PhD but [person with dementia] said please don’t do anymore, so I never did. I’ve still got until 99 though, haven’t I? (Female spouse carer, aged 77 years)

Taking on the caring role often reduced or removed the capacity to work and resulted in associated personal and financial loss: . . .I also did quite a lot of voluntary work. I was a general guide at the [name of] Museum and Art Gallery and that was lovely . . . And that was very important for my intellectual side because I was meeting people . . . The guides . . . we were all interested in what we did . . . we had discussion groups every second Tuesday, we met as guides and this was a kind of training period and as time went I had to give that up. (Female spouse carer, aged 75 years)

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You have to find ways and means of, um, interacting that don’t cost money . . . And I mean you lose a lot of your friends because of that. You can’t go out to the theatre or to, um, shows that you might have done before on a whim . . . one $80 ticket is something you just don’t contemplate anymore. (Female spouse carer, aged 56 years)

Spontaneity and planning social events ahead of time were less likely as the care needs of the person with dementia increased; carers found themselves shifting their focus towards becoming more familiar with their relative’s individual needs, managing crises as they arose and developing ways in which to respond best. The constant need to provide care was at times exhausting and could leave carers feeling they had no time or space for themselves: But I can’t hop in the car and go somewhere or catch the train and I’m a bit reluctant to take [person with dementia] to friends at the moment because of incontinence. (Male spouse carer, aged 79 years) . . .you just can’t do the things you planned to do so it can be incredibly miserable and the hardest thing of all, for a carer, is that it doesn’t matter whether you’re tired, whether you’re sick, whether you want to do something else or whether you’re just plain cranky. You have to jump to whatever the person you’re caring for needs immediately. (Female spouse carer, aged 77 years)

Some carers attributed marriage tension and break-up to the needs of the parent with dementia taking precedence over plans made between a carer and their partner: I’ve got a male friend but I can’t think of the future. Like I can’t think of . . . we can’t progress a relationship any further, or I can’t. (Female adult child carer, non-Englishspeaking background, aged 51 years) A lot has changed and so my relationship with my partner has gone. (Female adult child carer, aged 54 years)

Family and friends avoiding the person with dementia (and thus the carer) was a strong pattern, as was the carer avoiding others. This avoidance related to the stigma associated with a diagnosis of dementia; the behaviours of the person with dementia; lack of awareness in the community generally about dementia; lack of knowledge and skills in communicating with people with dementia; and carers feeling unable to entertain at home because it was not their ‘home’. This avoidance resulted in loss of friends. Some carers were angered at the hurt caused by dementia-related stigma: People never visit people with Alzheimer’s. I’m sure they think it’s catching. There’s a need for an awareness programme to make people in the community understand what Alzheimer’s or any form of dementia actually is. It’s

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not like rabies, that they’re going to catch [it] or something like that – bat flu or swine flu or anything else. (Female spouse carer, aged 83 years) I’m not really, actually, entertaining at home. My kids complain about that too . . . ’cause they’re saying they can’t . . . to bring friends home and to entertain at home . . . to have people for a meal for example in the evening because mum . . . can’t actually participate in conversations . . . she mumbles things that don’t make sense you know, she can be disruptive, she needs attention, she might have an accident, like an incontinence accident . . . Some people well . . . rarely they come now. (Female adult child carer, non-English-speaking background, aged 51 years) It’s not my own home, I can’t do what I want and so it’s not my little nest and so that affects your social activities if you’re a little bit housebound, I don’t have people over because I, well, it’s not your place and so it’s very much your mother’s home and so that affects your social life, it just does. . .. (Female adult child carer, aged 54 years)

Carers did, however, understand the avoidance of others due to dementia-related behaviour, as they, too, were at times embarrassed: Yeah I tell you before that he has emotion swings and cranky very easily. When we go out together sometimes people did not understand. And I feel embarrassed sometimes when my husband shows anger and is just very cranky to the group or just does something like bang hand on the board and shout about his anger or something. (Female spouse carer, non-English-speaking background, aged 51 years)

Others, including friends and family, did not know how to respond to the ways in which the behaviour of the person with dementia had changed. Dementia-related behaviours were outside socially accepted norms, confronting and at times embarrassing. There was a ‘let out clause’ in the often expressed view that the person with dementia is no longer the person they were and did not know you, so there was no point visiting: . . .my brother and sister made a choice of not really being involved in the caring role. They would have preferred for mum and dad to go to a nursing home but I couldn’t stand that because they don’t speak English. (Female adult child carer, non-English-speaking background, aged 63 years)

There were also some carers who felt so constrained by the care of their family member that they rarely left the house, even having food delivered: No social activities – even home here by myself I’m just me at home. I don’t have social – I never leave the house. I’m definitely by myself . . . I’ve got a lady here from the RSL © 2014 John Wiley & Sons Ltd

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[Returned and Services League]. She has just bought my shopping in. (Female spouse carer, aged 84 years) We started bringing the meals in. (Female adult child carer, aged 51 years)

Employing strategies to maximise desired social participation Carers spoke about the strategies they used to maximise their social participation while caring for a relative with dementia. These ranged from assistance from family and friends and formal services to self-care and help with work at home and in business: If I needed for somebody to cover for half an hour, she would always come over and sit with him. So I had that kind of friend support. (Female spouse carer, aged 50 years) Oh yes, I’ve got a great circle of friends so I’m fine and our joint friends are wonderful as well, I mean I organize a lot of picnics and lunches, I organize a lot of lunches at home. We go out to concerts a lot and we have an active social life while we can. (Female spouse carer, aged 64 years)

support, you know, it got beyond that stage. (Male spouse carer, aged 68 years)

Establishing new meaningful connections, activities, attitudes, skills and knowledge Social participation while caring for a person living with dementia very often involved the establishment of new meaningful connections, activities, attitudes, skills and knowledge. As was the case before taking on the role of carer, social participation involved doing things – for enjoyment, to maintain employability and to feel useful. It could also involve the use of assistive technology, and maintaining work skills: Because with that [computer] I could actually keep in touch with other organisations, with people, with minutes, with all that sort of stuff, and the fact that I was undertaking roles in these various organisations and such like, meant that I had no time to fall in a heap, or whatever. (Female spouse carer, aged 77 years)

Carers . . . they are my anchor. They help with lectures and offer advice on where to go for respite. I do have other friends and I receive a bit of support from the congregation. . .. (Male spouse carer, aged 79 years)

Living with a person with dementia highlighted for carers just how important social participation can be. Social participation was at times concerned with sharing but it was also a means of having a break and ‘clearing the mind’:

I have become quite involved with the Alzheimer’s Association . . . We do all sorts of stuff with this group . . . So there’s that aspect of being involved with interesting and intelligent people and learning from them. (Female adult child carer, aged 54 years)

. . .my daughter came over from New Zealand for 2 weeks and I had a day in the city and I went to the zoo and wandered around and that washed my mind . . . The thing with respite is that you are washing your mind. (Male spouse carer, aged 79 years)

However, using supports and services could be problematic at times, for instance when assistance was not available when required, or was not reliable: . . .the reality is that I can’t go making plans if the respite person is not going to be reliable enough to turn up when needed . . . um, I mean, I have to be here 24 hours a day, 7 days a week . . . if a person can’t be here for 2 hours 1 day a week and be relied upon to be here then I’m not going to bother with her. (Female spouse carer, aged 56 years)

Being consumed by their caring role and having reduced opportunities for social participation could take its toll, with some carers turning to counselling, antidepressants and other health interventions to assist coping: I’m on antidepressants to be honest . . . but yeah, it’s a mental strain because you love them dearly and all that, but . . . but . . . a person can only take so much. (Female adult child carer, aged 63 years) I used to go out there for . . . to see the counsellor. I think it got to the stage where the things that I needed in terms of © 2014 John Wiley & Sons Ltd

To know others were having similar experiences and to share ideas for coping were integral aspects of participation, and this parallels the vast evidence base for psychosocial intervention for carers. These meaningful connections could also reinforce the feeling of selfhood that sometimes seemed lost in the challenging role of caring for another on a ‘36-hour day’ basis: But when you’re at the Memory Lane Cafe, everybody’s in the same boat so people can sort of bounce off one another, what’s happening to you? How’s things been over the past month? I think that’s really helpful and I think to some people, they like to – because sometimes you can say your life has really been a bit shitty lately. You get there and talk to other people and you brighten up and yeah it’s good. (Female spouse and adult child carer, aged 66 years)

By engaging in these connections, carers could rebuild opportunities for social participation, exercise choice compatible with their caring responsibilities, develop new friendships and lay foundations for a life beyond caring. 555

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Discussion The ways in which carers respond to the demands of caring are unique (Sorensen & Conwell 2011) and this is no less true when it comes to how carers adapt to changes in social participation. For some carers, the themes emerging from this study were experienced as a trajectory, with carers moving from primarily self-determined modes of participation prior to dementia care-giving through a transitional period of loss (of freedom, expansiveness of choice, spontaneity, meaningful connections and capacity to plan) into newly found and negotiated ways of social participation. For others, the experience was less linear, with some carers unable to move beyond the loss of previously enjoyed means of participation. However, it remains unclear whether the process of adaptation ends prematurely for these carers (perhaps due to carer-related factors, such as low levels of resilience or other coping resources) or whether they too will follow a more complete process of adaptation with the passage of time. Further research is required to this end. While the caring role can have positive benefits (Nolan et al. 2009), common across all carers interviewed was their experience of loss: many aspects of social participation (i.e. being able to choose how, when, where and why they participated) were lost to some extent, often entirely or substantially. The reasons for this were varied, and included poverty and unemployment, which have been identified previously as contributing factors to social exclusion (Gallie et al. 2003, Kieselbach 2003), as well as embarrassment for themselves, the person with dementia or others due to antisocial behaviours and associated stigma (Dura et al. 1991, Drentea et al. 2006). The effects of this loss combined with the challenges of caring impacted on relationships for some. Marriages were strained and broken, children stopped bringing friends home and/ or stopped coming home themselves, and many friends and siblings removed themselves from the situation. Living in the home of the person with dementia – when that person was not a spouse – challenged the sense of self associated with one’s own space and place (Goffman 1959). Those carers who were able to move beyond their loss made use of available resources or created new ones. Choice was constrained, or different, but some carers were able to build attitudes, skills and connections, all of which could provide new avenues for social participation. Carer support groups often provided opportunities to forge new connections and broaden social activities while participating in the 556

exchange of information and education. This is especially important at a time when interactions with existing friends can prove unsatisfactory (Lilly et al. 2003). The utility of carer support groups was recently highlighted by a meta-analysis demonstrating significant effects on carer psychological wellbeing, depression, burden and social outcomes (Chien et al. 2011). Other carers, however, were not able to move beyond the initial loss of social participation experienced with the introduction of dementia care-giving. These carers for various reasons were not able to modify previously enjoyed means of participation or were unable to find or access acceptable new forms of participation. For these carers, the process of adaptation was cut short. Adaptation is much more difficult when the person is unaware of available resources; the resources are unavailable when they most need them; they simply have exhausted their energy; or there are barriers such as stigma, or language or cultural difficulties. For the carers in this study, being able to choose how they participated in society was of high importance, lending support to definitions of social participation that emphasise self-determined modes of engagement (Bukov et al. 2002, Institute for Social Participation 2009). What is needed now is the provision of the necessary conditions to uphold the humanity and citizenship of carers and for the people for whom they care (Brannelly 2011). To this end, several main recommendations can be made on the basis of the findings presented in this paper. First, the agency of carers needs to be foremost in any social inclusion policy, reflecting that the types of meaningful connections forged will be unique to each individual carer. Second, there is ample opportunity to capitalise on the community that forms between carers in terms of enhancing support, activities and connections, and it is especially important to do this given the demonstrated positive effects carer support can have on psychological outcomes (Chien et al. 2011). Third, although representations of people with dementia have changed over time, there is a continued need to raise public awareness of dementia so that associated behaviours are viewed with understanding, and so that people living with dementia and their family carers can continue to actively be a part of the society to which they belong.

Conclusion The experience of social participation for carers of people living with dementia can be understood as a process of adaptation from the pre-carer situation of © 2014 John Wiley & Sons Ltd

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relatively unimpeded choice, through the diverse but uniformly significant losses that come with the adoption of the carer role, to accessing available resources and creating new meaning. Not surprisingly, individual carers will vary in the level of support needed to enable them to access the resources required to progress through this process of adaptation. Similarly, how carers wish to socially participate will be different from one carer to the next; for many, this will take the form of face-to-face carer support meetings, while for others the internet or other forms of technology may hold more appeal. Acknowledgement of the major economical, emotional and healthcare contribution carers make to society must be more than rhetoric; social participation is essential to carer well-being, and there is a societal responsibility to ensure the active engagement of carers is supported by social inclusion policies that acknowledge difference and serve individual need and agency. Limitations The generalisability of the findings reported in this paper is limited due to the small and qualitative nature of the research. In addition, while the data were rich and saturated in this study, more time and funding could have allowed further efforts to recruit more participants from ‘marginalised’ groups such as GLBT, carers from non-English-speaking backgrounds, or rural and remote carers. This study also did not investigate whether social participation is impacted differently according to the stage and type of dementia experienced, or whether there were differences based on the relation of the carer to the person living with dementia (e.g. spouse vs. adult child).

Acknowledgements This project was funded by the Dementia Collaborative Research Centre 3 – Carers and Consumers, as part of the Australian Government’s Dementia Initiative. The views expressed in this work are the views of its author/s and not necessarily those of the Australian government. The authors acknowledge Dr Matylda Howard and Dr Carol Hart for their assistance with the project on which this paper is based.

Conflict of interest No conflict of interest has been declared by the authors. © 2014 John Wiley & Sons Ltd

References Al-Janabi H., Coast J. & Flynn T.N. (2008) What do people value when they provide unpaid care for an older person? A meta-ethnography with interview follow-up. Social Science and Medicine 67, 111–121. Brækhus A., Øksengard R., Engedal K. & Laake K. (1998) Social and depressive stress suffered by spouses of patients with mild dementia. Scandinavian Journal of Primary Health Care 16, 242–246. Brannelly T. (2011) Sustaining citizenship: people with dementia and the phenomenon of social death. Nursing Ethics 18 (5), 662–671. Brodaty H. & Green A. (2002) Who cares for the carer? The often forgotten patient. Australian Family Physician 31 (9), 1–4. Bukov A., Maas I. & Lamperi T. (2002) Social participation in very old age: cross-sectional and longitudinal findings from base. Journal of Gerontology 57B (6), 510–517. Burchardt T., LeGrand J. & Piachaud D. (2002) Degrees of exclusion: developing a dynamic, multidimensional measure. In: J. Hills, J. LeGrand & D. Piachaud (Eds) Understanding Social Exclusion, pp. 30–43. Oxford University Press, Oxford. Chau R.C.M. & Yu S.W.K. (2001) Social exclusion of Chinese people in Britain. Critical Social Policy 21 (1), 103–125. Chien L.-Y., Chu H., Guo J.-L., Liao Y.-M., Chang L.-I., Chen C.-H. & Chou K.-R. (2011) Caregiver support groups in patients with dementia: a meta-analysis. International Journal of Geriatric Psychiatry 26, 1089–1098. Crisp B.R. (2010) Belonging, connectedness and social exclusion. Journal of Social Inclusion 1 (2), 123–132. Daly L., McCarron M., Higgins A. & McCallion P. (2013) ‘Sustaining place’ – a grounded theory of how informal carers of people with dementia manage alternations to relationships within their social worlds. Journal of Clinical Nursing 22 (3–4), 501–512. Dow B., Haralambous B., Hempton C. & Hunt S. (2011) Evaluation of Alzheimer’s Australia Vic Memory Lane Cafes. International Psychogeriatrics 23 (2), 246–255. Drentea P., Clay O.J., Roth D.L. & Mittelman M.S. (2006) Predictors of improvement in social support: five-year effects of a structured intervention for caregivers of spouses with Alzheimer’s disease. Social Science and Medicine 63 (4), 957–967. Dura J.R., Kiecolt-Glaser J.K. & Stukenberg K.W. (1991) Anxiety and depressive disorders in adult children caring for demented parents. Psychology and Aging 6 (3), 467–473. Gallie D., Paugam S. & Jacobs S. (2003) Unemployment, poverty and social isolation: is there a vicious circle of social exclusion? European Societies 5 (1), 1–32. Glaser B.G. & Strauss A. (1967) The Discovery of Grounded Theory. Strategies for Qualitative Research. Aldine, New York. Goffman E. (1959) The Presentation of Self in Everyday Life. Doubleday, New York. Hirst M. (2005) Carer distress: a prospective, populationbased study. Social Science and Medicine 61, 697–708. Institute for Social Participation (2009) Social Participation: A Contribution to Understanding, Research and Policy. Working Paper. La Trobe University, Melbourne, Australia. Kieselbach T. (2003) Long-term unemployment among young people: the risk of social exclusion. American Journal of Community Psychology 32 (1/2), 69–76.

557

R. Nay et al.

Levasseur M., Richard L., Gauvin L. & Raymond E. (2010) Inventory and analysis of definitions of social participation found in the aging literature: proposed taxonomy of social activities. Social Science and Medicine 71, 2141–2149. Lilly M.L., Richards B.S. & Buckwalter K.C. (2003) Friends and social support in dementia caregiving. Journal of Gerontological Nursing 29 (1), 29–36. Moise P., Schwarzinger M. & Um M.-Y. (2004) Dementia Care in 9 OECD Countries: A Comparative Analysis. OECD Health Working Paper no. 13. OECD, Paris. Nolan M., Bauer M. & Nay R. (2009) Supporting family carers: implementing a relational and dynamic approach. In R. Nay & S. Garratt (Eds) Older People: Issues and Innovations in Care, 3rd edn, pp. 136–152. Churchill Livingstone, Chatswood, NSW, Australia. Ory M.G., Hoffman R.R., Yee J.L., Tennstedt S. & Shulz R. (1999) Prevalence and impact of caregiving: a detailed comparison between dementia and nondementia caregivers. Gerontologist 39 (2), 177–185.

558

Owens J. (2009) The influence of ‘access’ on social exclusion and social connectedness for people with disabilities. In: A. Taket, B.R. Crisp, A. Nevill, G. Lamaro, M. Graham & S. Barter-Godfrey (Eds) Theorising Social Exclusion, pp. 78– 86. Routledge, London. Perkins E. & LaMartin K.M. (2012) The internet as social support for older carers of adults with intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities 9 (1), 53–62. Sorensen S. & Conwell Y. (2011) Issues in dementia caregiving: effects on mental and physical health, intervention strategies, and research needs. American Journal of Geriatric Psychiatry 19 (6), 491–496. Strauss A. & Corbin J. (1998) Basics of Qualitative Research. Sage, Thousand Oaks, CA. Taket A., Crisp B.R., Nevill A., Lamaro G., Graham M. & Barter-Godfrey S. (Eds) (2009) Theorising Social Exclusion. Routledge, London. Williams C. (2012) Chronic illness and informal carers: ‘non-persons’ in the health system, neither carers, workers or citizens. Health Sociology Review 21 (1), 58–68.

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