Identifying equitable models of long term care for older adults in - - PDF document

Identifying equitable models of long term care for older adults in South Africa: exploring the salience of individualisation Emily Freeman and Jaco Hoffman Building on work carried out by Emily Freeman and Stuart Gietel-Basten on individualisation in the context of fertility decline in Asia. See ‘I couldn't hold the whole thing’: The role of gender, individualisation and risk in shaping fertility preferences in Taiwan forthcoming in Asian Population Studies Early draft paper prepared for IUSSP 2017 In 1994 the negotiation to end Apartheid in South Africa was completed and a massive restructuring

• f the State began. Things changed quickly and social security expenditure increased dramatically.

However by 1997, still 87% of the welfare services budget was spent on residential services and facilities, primarily for older adults, almost all of whom were White (Ministry for Welfare and Population Development, 1997). The White Paper for Social Welfare published that year marked the beginning of attempts to readdress that racial inequity, primarily through a roll-back of State responsibility for long term care in older age, which is described as being “inappropriate”(Ministry for Welfare and Population Development, 1997; 72). There was and remains no discussion about what that means. Today there has only been slight movement in this position. South Africa is a member of the African Union which signed a Common Position on Long Term Care Systems for Africa in May 2017, but at national level the dominance of supposedly ‘appropriate’ family care over provision by State or

• ther formal sector persists. State subsidised care home placements are available only to older

adults in need of 24 hour care, who qualify for the means-tested Older Persons Grant and significantly, based on individual care home’s assessments, have no family to support them (DQ-98 Assessment). Community-based care and support services largely fall into two camps: good quality for-profit home-based nursing care services that cater to affluent, typically urban, typically white populations, and patchy, poorer quality, non-profit, under-resourced services delivered to typically poor, typically black populations by non-government organisations that are inconsistently funded by the State. Despite policy support for non-residential formal LTC, the collective normative bottom line remains that filial obligation and intergenerational solidarity will and should underpin the nation’s response to caring for older people in need, with formal provision – whether from State or civil society – relevant only for the destitute. This paper explores what older people and their families themselves think about needing, providing and receiving care, and from whom: what is “appropriate” or “inappropriate”? Methods Data are drawn from 70 qualitative interviews with black older men and women and their family care (non)providers living in urban, peri-urban and rural racially- and economically-contrasting Gauteng and KwaZulu Natal provinces. Participants include:

 Older adults receiving home-based care  Older adults attending day care centres  Older adults living in residential care facilities  Older adults not receiving formally-provided long term care  Families (not) providing long term care to older adults Interviews explored older adults’ experiences of needing, giving and receiving care and perceptions

• f formal and family care, and families’ experiences of and attitudes towards providing care.

In addition, two focus group interviews with middle-class older adults (n=30) explored perceptions and experiences of black older adults who could potentially afford to pay for long term care. Participants were interviewed in their preferred language (Sesotho, isiZulu, Xhosa and English) by local research assistants and the first author between November and December 2016. Findings In older and younger adults’ discussions, the ‘African family’, the large household of extended family with shared economic and social goals, still provides a strong reference point, and in many cases, prevailing practice. However the dominant discourse in both group and individual interviews is one

• f transition. Participants identified their realties and their preferences around care as reflective of

wider social changes that were contrary to the normative pull of filial dependency. They were grounded in the specific context: entrenched poverty (>20% population (10.2 million) live below the food poverty line), extremely high unemployment (around 40%), availability of the Older Persons Grant but absence of any state safety nets for those deemed able to work, high mortality among younger adults (from HIV/AIDS, violence, road traffic accidents) but also the possibilities presented by the emerging middle class. In this paper, we want to explore just one of the foci of this transitional discourse: individualisation,

• r the search for a life of one’s own, and its interaction with informal (filial) and formal care. It is by

no means the only story in these data – and it interacts with other foci – such as reciprocity, the importance of good family relationships and religious norms. The theory of individualisation by Ulrich Beck and Elizabeth Beck-Gernsheim is used to explain many elements associated with the Second Demographic Transition: the emergence of a multiplicity of family formation typologies (not just heterosexual married couples with children they have conceived) including reduced fertility. Put simply, it charts the process in which men and women become active agents in shaping and reshaping their own identities within both the home and the wider world, gaining freedoms and options rather than living out the lives that past institutions had designed for them. It hasn’t really been used for looking at care for older people, but we think it has real relevance for understanding some of the stories collected. Take Bongiwe, a woman in her mid-50s who cares for her now-co-resident mother-in-law. Her mother-in-law has extreme difficulty moving, is incontinent, cognitively impaired and frequently

• angry. Bongiwe herself had a stroke a few years ago that left her without the use of one arm making

the instrumental care she is required to provide even more difficult for her. Bongiwe hasn’t always had an easy relationship with her mother-in-law but when she started to need daily care, she was the one called upon to give it, rather than her siblings-in-law:

I was forced to have her living with me, especially as I was also unwell [so] I wasn’t working anymore… Her children would have had to take her to a (care) home… no one is without a wife here, and they married educated wives. I am the only one who is not educated, the only one who is from the rural areas. You see, my younger brother in law is married to a Coloured lady, they have a house in Waterfall, in a posh suburb. Grandma does not even get a chance to sleep there, when she visits. I normally pack stuff for her when she visits, hoping that I will also get a break from looking after her, maybe a week’s break, but we will come back with her on the same day. I once travelled with her to Newcastle… to her oldest son…they went to settle in Newcastle to be far from the family, they are tired and did not want to be drawn up into the family squabbles. And the story goes on: the son in Newcastle and his wife wouldn’t take their mother for an overnight visit, the youngest son has a good job managing a hospital in America and his wife has since returned to South Africa but has also refused to have her mother-in-law stay with her. This couple feel they are doing enough by paying for her 90th birthday party. As Bongiwe laments: Me? Ever since I arrived here, I was here for quite a long time, everything bad that happens happens on my watch. I have seen it all. Because when you are not educated you get it all. You [the interviewer] did well by being educated. This is the story, nothing else. In Bongiwe’s narrative, migration and education facilitate an escape from the life that past institutions have designed. They enabled her sisters and brothers in law to organise their own biographies with the goal of creating a ‘life of ones’ own’. The women in particular are cut free from their ‘status fate’ as housewives and caregivers. But it is in households that don’t have someone like Bongiwe, the provision of day-to-day care for dependent older members ceases to become “a natural part of life” – a taken for granted part of their trajectories to become instead “the object of conscious planning and calculation…in short, the more it becomes the ‘question of [care]’ (p. 126, Beck and Beck-Gernsheim with regards to fertility choices). Zandile is a younger woman, living with her elderly mother and her mother’s younger brother. Following a stroke her uncle has been left bed-bound, incontinent and unable to speak. Although Zandile and her mother provide some care, formal caregivers from paid-for and non-profit

• rganisations care for him. They are grateful for the assistance they receive:

No sister, you can’t be always looking after someone. We, I, we also have our own lives. Like, we are taking care of our uncle because he is our uncle, there is nothing [else] we can do. But in the end everyone wants to live their lives. Like a person, when you are going to live with someone who is sick- when a person is sick, they need more

• attention. So we have our own lives to live as well. The person who looks after grandpa,

is she a trained professional. Zandile wants to have a life beyond being a caregiver – a professional life, an active social life, activities that allow her to take care of herself. Formal care – a paid-for home-based caregiver – makes that a possibility. In her narrative, both parties have what they require: her uncle receives

the instrumental care he needs from someone who is qualified to give good care, and she and her mother are able to get on with their lives. It is worth mentioning that this narrative is not only in the interview transcripts of younger adults. Older adults also discussed the difficulty they experienced caring for their very old parents and how doing so limited their – or their sibling’s – lives. Take for example Emma’s story: But I think it’s easy said than done. It’s easy we’re talking like this [about children not caring]. I remember, when my mother died, there were…five [of us] in Soweto…There was always a quarrel. When we had to take my mother to the clinic, one would say’ I did it last time. I did it last time’… there was still a problem [to provide care] regardless that we were five. This one, who stays with my mother, never worked because we said she must look after my mother and then she would say ‘I look after her, you take her to the clinic’…Taking mum to the clinic, hiring a car, putting her into the car… washing

• her. Oh! That queue at clinic! … It’s your own mother. You love her so much, but you

don’t like the work. It’s easy said than done. I’ve been there and I really know that it’s real hard. Lucy had taken her brother in law to a care home: [My brother] was staying with my elder brother and they were not getting along well. So we were trying to, remove him maybe he must stay on his own. But then we had to go back there and we had to speak to the older brother there. He’s got to be here. Where can he go? [Quietly] He’s got no-one to look after him… He’s got [children], but, like they say, they already, they’re all educated, they’ve been to varsity, but, [tuts], he’s got no-one to help, unless I go home and help there and there with the cooking. So I’ve also got my own problems. So, it’s a bit difficult. In their discussions, participants resisted the assumption of their caregiving labour. In a group interview they demonstrated a correcting discourse: pulling up their peers on any suggestion that the daily demands of providing instrumental and personal care for old people is easy or that it is a ‘natural’, normative part of family trajectories. Looking in Europe, this is a phenomenon Guberman and colleagues have called the ‘denaturalisation’ of care – a move away from attributing social practices to human nature (Lavoie, Guberman et al. 2009 in Guberman et al. 2012). This challenge also extended to provision of care downwards through the generations to their children and grandchildren. Although the narrative of self-sacrifice and duty-bound provision of care from older to younger generations for as long as needed was present, it was voiced in parallel to a louder narrative of dissatisfaction with multigenerational households. They not only complained about the effort caring for younger generations required, they also pushed against the normative assumption that care for grandchildren or grown-up children should be part of their roles. While they would not be without their loved ones in their lives, they would have preferred their lives to be less complicated and more autonomous. The strongest narrative concerned older adults’ search for a life of their own and peace in older age. Participants present themselves as being trapped by the traditional organisation of family and care and they looked for progress. Because really women, women have become slaves of their grandchildren! That’s what I don’t like about it. Right now, old people walk sideways, because of still picking their grandchildren in their backs! They have got no time for pleasure! [Claps hands to

emphasise] Even if they are out they are being oppressed by these grandchildren. So, if you talk to them, they are not happy but they don’t know how to get out of this because when you tell them about old age home they will say, ‘haai, I don’t know, what about my grandchildren? My son or my daughter is not working, so, what will happen to them?’ I said but there are grants. They can get grants. ‘No, no, just to be around them!’ but now you are sick, you say they can hardly give you a cup of tea, but you still want to stay with them? [group laughs agreement] Why don’t we just let go at some time? You have looked after these people from birth up to now [claps hands to

• emphasise. Group murmurs agreement. One says “yes!”]. You have done everything

for them and now you are running the role again. You are becoming a mother to their

• children. When are you going to rest? Perhaps in the graveyard

Participants describe a social context in which identity is strongly linked – and perhaps increasingly linked (to the extent that they look backwards and well as reflecting on today) – to the value of productivity and self-realisation. To that end, formal care for older people becomes an attractive

• ption not just to family members reluctant to sacrifice their life to care for an older person with

high dependency, but also to older people who have limited functional disability and have downward caregiving responsibility. A range of non-instrumental care services for older adults are presented as enabling older adults to ‘live a life of [their] own’ away from these responsibilities. Both day care centres and residential villages were discussed as an escape from caring for

• grandchildren. It provides evidence for the idea that individualisation supports formal care

provision. The centre caters for old people, it is good for old people, and they come to school, learn and keep themselves busy… there are things that [the centre] brings to certain old people for example if they experience abuse, and they also able to do certain work here to avoid stress…there are games going on, there is ball, they kick the ball, they are doing physical exercises and learning, you see… if one feels tired he or she sleeps here, they sleep and relax, you see? They have no worries or anything bothering them. It is fun and just wonderful, others dance, dance for the song, everyone is just happy, we sing and each of us would sing a song, we would sing loud, we do all that and have fun… You see if I leave [the centre], I can feel that I had good time here, ah if I get home, there… you see if children are back from school ah, they are naughty… but if I am here I do not see their naughtiness. I do not see all that when I am here, but if I am home they play with lights and all that, I have to warn them; you will hurt yourself, you will hurt yourself. Sometimes I just want to leave them… if I am here I am okay, I can do anything here and it is fun. I leave here in the afternoon, the day is almost over I go to my bed room, I feel peace of mind. [Jabulani] I think it is better to go to the retirement village, if possible. We can start applying now because there you’ve got your own, freedom. You can go to the shops. They’ve got special days where they’ve got, busses where they take to the malls and you can go and buy your shop, do shopping and whatever you like unlike going to the [old age] homes [in Soweto]. [Tuma]

We are still exploring whether this is a new shift or if it’s the way it’s always been. But, this understanding of formal caregiving for older people could certainly be viewed as a product of the specific social historical context of the Struggle against Apartheid and the post-Apartheid eras with their emphasis on the value of freedom and the possibility for self-actualisation for Black South Africans, supported by policies that did away with restrictions on movement and of affirmative action – existing and being campaigned for - such as Black Economic Empowerment or the campaign to increase access to tertiary education. Conclusion These data indicate that the care South African families are called upon to provide is strained. Although individualisation and the search for a life of one’s own was only one narrative relating to care in these data, and it’s not all as rosy as I’m presenting here – a younger person’s search for employment was not all about independence and a career, it was also a reflection of poverty and need to work, this lens nonetheless encourages us to conceptualise need for formal care for older adults in ways that are not wholly negative. In the narratives of older men and women and their families in South Africa, formal care was not only discussed as necessary to fill the care void for the most destitute – the abandoned and neglected, it was also presented positively as a strategy for enriching lives. This has direct implications for service provision. It will require policy and practice shifts to no longer take the African Family’s care labour for granted. Beck and Beck-Gerstein make the point that individualisation doesn’t damage social cohesion, but makes it possible. But it also notes that the

• ther side to of the individualisation dynamic is that as people are detached from traditional norms

and rules, they are simultaneously bound by the demands, rules and constraints produced by modern institutions. Given the inequitable, poor quality provision of non-profit formal care in South Africa and the high cost of private formal care, at present, the desire for a life of one’s own is likely to leave either younger adults and older adults without advanced care needs ultimately disappointed and frustrated, or, troublingly, older people with functional limitations without the care they need.