“Transforming elderly care at local, national and transnational levels” International conference Copenhagen 26-28 June 2008



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“Transforming elderly care at local, national and transnational levels”

International conference Copenhagen 26-28 June 2008




The welfare state, the individual and the need for care: older people’s views.

Evy Gunnarsson

Ph.D, associate professor

Department of Social Work, Stockholm University

e-mail: evy.gunnarsson@socarb.su.se

The institutions of the welfare state reach deep into people’s lives shaping the life course of the individual. Studies taking their starting point in people’s experiences argue that it is in everyday life that the structures and functioning of society will be understood. The actual life leads into power relations, processes and other relations organizing and determining the perspective in the context of every day life (Smith 1999, Berger and Luckman 1966).



Everyday life is affected by the earlier life course, social, political and economic factors cooperating over time (Arber and Ginn 1995, Moen 1996). Central to the life course perspective is that the individual is set in a larger context and is seen as an actor creating her or his own life given the limitations and possibilities society offers at different times (Giele and Elder 1998). The welfare state affects the options available to women and men and the conditions under which they assume their roles at different stages in their life course (Daly and Rake 2003:3).
The Swedish welfare state, characterized by solidarity and universalism, is regarded as an institutional redistributive model of social policy, according to Titmuss´ (1974) typology or as a social democratic welfare regime, according to Esping-Andersen´s (1990). In Esping-Andersen´s model the decommodifying of the working class was the focus. Later on when criticized by feminist scholars Esping-Andersen took into account the caring dimension and family policy (Siim and Borchorst 2005). The defamilization of the Swedish welfare state has made it possible for women to become more economically independent of a husband and family. Social policy reforms mainly have been directed towards the individual, men and women, but not towards the family. Independence and individualization have been stressed (Rothstein 2003, Trädgårdh 1997). In the Nordic countries feminists have seen a partnership for liberation between women and the state and the state has offered child care and eldercare (Siim 1990).
Policy on aging is also premised on building independence and individualization. Swedish aging policy assume that older people will be able to live active lives and exert ongoing influence on their everyday lives (NBHW 2007). Old people are supposed to live in their own homes with access to eldercare and medical care. The conditions for this ideal have developed gradually after the Second World War (Edebalk 2003). First the pension system has given opportunities for greater economic independence. The second condition is the provision of flats adjusted to the needs of older people while the third is the possibility of getting home help and care in one’s own home from the municipality. Eldercare, which expanded in the 1960s and 1970s, initially provided universal home help to all older people who needed it. However, gradually services to older people have changed in character from a service for everyone in need of home help to eldercare for the very frail requiring more demanding care (Szebehely 2000, 2005, Palme et al 2003).
Today 20 percent of older people over 80 years old have home help compared with 34 percent in 1980 while the percentage of older people living in special housing has decreased from 28 percent to 17 percent (Larsson and Szebehely 2006).
In the 1990s family-provided care of older people increased (Johansson et al 2003, Szebehely and Trydegård 2007). Such help provided by informal carers has primarily replaced public eldercare formerly provided to older people with less extensive needs. For older people with greater needs informal care is complementary; even so, 44 percent of older people with greater needs only had access to informal help in 2004 (Szebehely and Trydegård 2007). This is also consistent with the decline in eldercare services for tasks such as shopping, cooking, cleaning and laundry (Johansson et al 2003). These changes affect the lives of older people in vulnerable situations, but the preferences of older people themselves are scarcely studied. Szebehely and Trydegård (2007), however, have elaborated data from year 2000 that indicate that just over 50 percent of people older than 75 years prefer help from public eldercare: barely 30 percent preferred the help of a spouse and only approximately one out of ten preferred the help of next of kin living outside the household.
Such changes in public eldercare raise questions about universal versus more selective care for older people. Blomberg and Petersson (2003) argue that the gap is broadening between what older people today see as their right and what they actually get or are entitled to. This implies that the confidence in eldercare and its legitimacy has declined. Studies of citizens´ confidence in various public services also indicate that confidence in eldercare is lower than in other public services (SOU 2003:91).These changes in eldercare services have also been accompanied by reports of poor conditions and neglect (Brodin 2005). According to Johansson et al (2003), the changes may imply that older people and their offspring will be less likely than before to find public services acceptable. Critical attention from the Swedish media and general public may also lead to a shift in how public services are perceived (ibid).

Aim


Swedish research has mainly focused on frail and care-demanding older people not paying the same attention to older people who have a lesser need for care or who receive no home help at all (Gunnarsson 2002, Öberg 2005). Most studies select their samples from those who already are frail (see e.g. Torres and Hammarström 2006, Dunér and Nordström 2005, Janlöv et al 2005). Many older people, however, turn out to be in a grey zone between “alert senior citizens” and older people needing extensive care. Between these extremes, “ordinary” old women and men are found with their various ailments and possible illnesses but without a need of help in everyday life; these older people are often invisible in research.
This study adds to our understanding of how older people experience aging and reflects on the need for care in the Swedish welfare context. What meaning do older people give their aging? What meaning do they give the need for care now and in the future? How do they think of eldercare services?

Method


For this study informants were recruited via advertising in a paper read by many in the chosen study region. The advertisement called for the participation of people aged 75 years or older, still living in their own homes and interested in taking part in research into everyday life and aging. Altogether, 25 people replied on the advertisement: 20 people (12 women and eight men) were interviewed, while five of those who originally replied did not take part in the end due to difficulties finding convenient meeting times or second thoughts about taking part. The author interviewed the informants three times, with one year between each meeting. The first interview was open-ended and the informants were free to tell about their lives. The second interview (with 18 people) was more thematically structured, partly to supplement what had been discussed in the first interview and partly to get answers to more direct questions about health and about changes over the year and in everyday life. The third interview (with 16 people) also included the themes of changes over the year and in everyday life as well as the informant’s views on the need for help which had also been treated, though more implicitly, in the second interview. All interviews took place in the informant’s homes. The interviews lasted between one hour and three and a half hours. The interviews were tape-recorded and transcribed in their entirety. They were read and reread several times and were analyzed one by one. Later on the material was thematically structured and coded to identify empirical and theoretical concepts (Widerberg 2002).
The informants said that they took part in the study mainly because they thought it important to challenge the general impression of older people as frail and dependent, an impression they thought dominated in the mass media and society. They simply wanted to provide evidence of lives that did not consist only of misery, and in this they thought they had something to tell. This article analyzes the views of the ten women and six men, who took part in all three interviews. Of the four informants not taking part in the third interview, two had died, one man had problems with his memory and speech and one woman could not be contacted.

About the group


The informants were between 77 and 92 years old at the time of the third interview: six of the women were widows and four were married while four of the men were widowers and two were married. All informants were native-born Swedes. The informants belong to a cohort in which gainful employment for women had become more common. All the female informants had worked outside the home at various times, some had taken a break when their children were of preschool age, while others kept on working continuously. The socio-economic conditions varied in the group, some informants only having flat-rate pensions, others having higher pensions. No one, however, thought they hade problems making ends meet. This is the situation for most older people in Sweden today, though there are great differences between women and men, men having higher pensions in all age groups (Larsson 2007a). Most informants rated their health as good, only a few rating it as neither good nor bad, irrespective of whether they were experiencing illnesses or other ailments, as the informants tended to rate their health in relation to other older people in their surroundings. Other studies have identified the contradictory fact that older people despite experiencing many ailments, talk about their health as generally good (Thorslund and Parker 2005, Svensson 2006). Most older people over the age of 65, however, are relatively healthy and in full possession of their faculties (Larsson 2007a). Two of the informants were receiving formal help.

Findings


As mentioned earlier, the welfare state reaches deep into people’s lives. For older people today the changes in eldercare affect their lives and possibilities of maintaining independent lives. This study examines three main themes relating to this topic, namely the informants´ understanding of 1) aging, 2) of their need for help in the future and 3) of eldercare and in some cases the experience of ongoing public home help.

Theme: Aging


Aging can be understood in terms of at least three different concepts: chronological, social and physical age (Arber and Ginn 1995). Chronological age is related to the number of years one has been living and often determines eligibility for various benefits such as old-age pension. Social age is socially constructed and is shaped by norms and images of how we ought to be aging. Physical age is determined by one´s ability to function and by any bodily impairments experienced.
Health: good or bad

A common pattern was for the informants to connect the question of aging with physical age and health. If you are healthy it is a privilege to get older one of the informants says continuing thus:

to be able to take advantage of what life offers, maybe in slow motion but this does not reduce the experience. On the contrary, there are a lot of small things that you enjoy much more than when you were in the middle of life. (Elsa aged77 years)

It is not negative to be old: rather, it is being frail and dependent that is unpleasant to think about. Another woman, also aged 77 years, says

when your strength is declining and you are unable to do anything and you must have help with a lot of things, I think that would be dull. (Gerda aged 77 years)

It is natural to get older, Maja (aged 91 years) says, and adds that we cannot ask from life that we always shall be alert.

Two main attitudes regarding aging can be distinguished among the informants. The first attitude is one of acceptance and preparation: the oldest informants and those with impaired functions affecting everyday life typically display this attitude. The other attitude is that of taking one day at a time, not thinking of tomorrow. The informants displaying this outlook are those not experiencing impairments that influence their every day lives.
Being prepared

Preparing oneself is a way of accepting that life will not go on forever, an attitude evident in different ways in the interviews. Ester (aged 92 years) says that she of course sometimes wonders when it will end. She does not feel frail but has problems with her back. Now, however, she has started to arrange all her papers and says she has to do “death cleaning”.

Another way of preparing oneself is that used by Britta (aged 83 years) who has told the postman to call on someone if he notices that the post box has not been emptied.

Gudrun (aged 78 years) has had a stroke and is preparing herself mentally and says that she does not live as though she will feel all right every day. She also accepts that the body does not stay fit forever even though some of her friends seem to.


Take one day at a time

The informants who take one day at a time say, when asked about aging, that they had not thought about it before being confronted with it. They were not so eager to discuss it. Alice (aged 80 years) says that she does not want to get deeper into the question: she says that she takes one day at a time and does not think you ought to make too many plans. Arne (aged 87 years) says that he cannot live forever but it is nothing he is worrying about, one just has to take one day at a time. However, he thinks that time is going too fast. Several of the male informants were happy-go-lucky in relation to aging. Oscar (aged 86 years) says that he feels young in mind and will try to go on living and keep in shape.


Theme: The need for help


I walk around hoping that I will be able to manage everything by myself up to the day it ends, that it will go fast. I think like that. I will be spared the situation of having other people doing things for me or helping me with anything. (Maja aged 91 years)

In her statement Maja summarizes what most of the informants said when asked how they regarded help now and in the future. They wanted to live independent lives and did not want to burden anyone, neither relatives nor society. This sentiment was more marked on the part of the women than the men studied.


Brush aside

A common pattern was for the informants to brush aside thoughts of becoming frail, dependent and in need of help. Erika (aged 78 years) says “You mean if I could not run the household by myself. Well, may that day never come. Well, I do not know, I have not

thought about it.” Another woman, Britta (aged 83 years), says “It will happen eventually that I cannot get out of bed and cannot go to the toilet, but I have not thought that far.”

Oscar (aged 86 years) has not even thought of the possibility of needing help in the future: what is important to him is to keep busy and lead a sound life.


A reasoning attitude

Other informants have a more reasoning attitude and reflect on their situation. Elsa (aged 77 years) discusses what would happen if her eyesight should get worse. She would then need more help and maybe could not walk the dog or drive the car. Ester (aged 92 years) is thinking about her housing, saying she has no stairs and a small garden she can walk around in, but if she cannot manage she has been thinking of moving into a home for older people. Urban (aged 77 years) says that he is a bit behind in planning. At the same time, he says that it is difficult to make advanced planning concerning the need for care in the future, because you do not know when you will need it. He thinks it is absurd to make plans ten years in advance and says that the future is here and now. Matilda (aged 77 years) also says that you cannot think that far ahead because you might need help any day. The most important thing for her is to get help with cleaning, because she thinks it is the last thing one can manage on one’s own

The difficulty of making plans for the future because of the uncertainty as to what might happen has also been found elsewhere (Clarke and Warren 2007).
Children as security

All of the informants have children, some living nearby, some farther away. The informants state that they can always call their children if they need some kind of help, for example, with shopping for heavy things and transportation.

Britta (aged 83 years) says that her son will come straight away if she needs any help.

The informants also think that their children will help them if they need more help in the future. Alice (aged 80 years) says that her daughter lives nearby: she thinks that she will look after her and help her with her cleaning if needed in the future. Elsa (aged 77 years) already had a lot of help from her children when she temporarily could not drive her car and she thinks her children will help her again if needed.

At the same time the informants do not expect personal hygiene care or extensive care from their children, even though they do not want to think as far ahead as being dependent on anyone for a lot of care in everyday life. It is only temporary help they talk about, not help on everyday basis, because, as several of them stress, the children have their jobs and their own lives. This also correlates with what Szebehely and Trydegård (2007) have previously found concerning the preferences of older people.

Theme: Conceptions of eldercare


From the outside

The informants´ conceptions of eldercare and of the possibilities of getting help are influenced both by the depiction of eldercare in the mass media and by the experiences of neighbors and friends. Ester (aged 92 years) does not think that she would get any help through public eldercare if she asked for it and has not even tried. She does not think she would get any help with cleaning or transportation. “Not as long as I can lift my legs to get on the bus will I get either”.

There is also uncertainty as to the possibility of getting help. “Will there be a helping hand when I need it?” Gerda (aged 77 years) asks, and Georg (aged 91 years) wonders whether “they” (eldercare) will have time for him.

Another issue is the quality of eldercare services. Georg says that he has heard terrible stories about eldercare: he thinks it is frightening and feels depressed when thinking about it.

Alice (aged 80 years) thinks that public eldercare and home help are problems today and she does not like what she sees at her neighbor’s house: “They rush in for five minutes and then they leave again…Their cars are driving on two wheels”. Alice claims that older people have to “live in dirt” and that the cleaning provided by the home help services is not thorough, for example, they do not clean away mould in the refrigerator because they do not have the time.

She also says that she does not want to think about the problems and hopes they will be solved when times come.

Urban (aged 77 years) says that it is impossible not to think about eldercare and about the reports of old people not being taken proper care of or getting too little to eat: “Maybe these are extreme cases, but what is really the matter?”

Some of the male informants had not reflected at all about eldercare. Arne (aged 87 years) says that he does not know how the municipality has arranged eldercare: “I have never bothered to get any information. As long as you manage by your own…”

The informants, not receiving any public help, mainly express negative expectations concerning eldercare in general and home help in particular.

At the same time, some of them say that they are prepared to move into special housing for older people if things do not work out in their own homes. These informants have all visited various homes for older people and they think they could move into such housing if necessary, sometime in the future, however.


From the inside

The attitude towards elder care tends, however, to change when a person develops a greater need for help in everyday life. Needing help in everyday life can be seen as a turning point after which various strategies are used to handle the situation (Dunér and Nordström 2005). Two of the informants have help in their own homes. Gudrun (aged 78 years) has had a stroke and is also visually impaired. Gudrun describes herself as someone who does not have difficulties asking for help. She has a positive relationship with the home helpers who visit her several times a day and even once at night: “I think it is pleasant. I am not afraid of people. They are very helpful and nice. We have good contact”.

Gudrun also points out that she would not be able to live at home if she did not have this help around the clock and she thinks it helps her to maintain some independence.

She also has help from her daughter one afternoon a week, who drinks coffee with her, helps with her medicine, washes her laundry and does some shopping. Gudrun is very pleased with this arrangement.

Klas (aged 85 years) has help with cleaning and thinks that this eases his everyday life: he also points out that in all other ways he is managing by himself.

Discussion


Staying healthy and independent in their everyday lives are prized values for the informants in this study. They did not want to think too much about the possibilities of being in more vulnerable situations or in need for extensive care. The informants who had prepared themselves in some ways were also those who had adopted a more reasoning attitude regarding need for help in the future. The informants who did not want to think about aging were also more prone to brushing aside thoughts of being dependent and in the need of help.

When thinking about help the informants first mentioned help with cleaning and that they wanted help from their children. In the interviews, however, it also became clear that they did not want help from their children with personal hygiene or more extensive care.


The informants took part in this study because, among other things, they wanted to present an alternative to the negative picture of aging that they think is dominant in society. This attitude possibly strengthened their reluctance to think of themselves as dependent and care demanding. On the other hand, many of the results of this study also correspond to results of studies of other samples.
After World War II the social policy of the Swedish welfare state developed three cornerstones regarding aging policy to make it possible for older people to live independent lives. The first cornerstone is a universal old age pension which means that older people are not dependant on families for support and living arrangements. Living with one’s offspring is almost non existent in Sweden and there are no statutory requirements for children to provide care for their parents (Andersson 2005). The informants stress very strongly that they do not want to burden anyone and definitely not their children.
Second housing policy has also favoured older people, allowing them the possibility of living in their own flats, which facilitates everyday life. There are still, however, some accessibility problems in that many apartment blocks lack elevators (Larsson 2007b). Only one of the informants had trouble getting out and she was living on the first floor of a building without an elevator.
The third cornerstone is eldercare and especially home help services. The public home help services expanded in the 1960s and 1970s but have since then been scaled back. Due to cutbacks and budget restrictions in the 1990s only older people with demanding care needs are now entitled to public home help. The informants are rather sceptical about home help, wondering whether the help will be there when needed and whether the quality of help will be acceptable. Developments in public home help that have led to much more care-demanding older people being taken care of in their own homes have meant that providing help for everyday activities, to a great extent, has again become a responsibility for spouses and children, mainly daughters. This development has affected the concerns of older people regarding the sort of help they will be able to get when they eventually cannot manage their everyday tasks. First is the concern as to whether any help will be available. Second is whether the quality of the care and services will satisfy the needs and expectations. A third concern, not so obvious, on the part of the informants, is who will determine what are legitimate needs and how this determination will be made.
At the same time the informants are determined to live independent lives as long as possible and do not want to burden anyone, neither their children nor society. The women, more than the men, stress the importance of remaining independent and not being a burden. This could be because the women taking part in this study have all worked outside the home, earning their own money. They have pointed out that it has always been important that they should work and support themselves. For the men independence has been taken for granted and has simply not been an issue: moreover, they were used to having a wife taking care of their homes. As well, the men in this study suffered from fewer ailments than did the women, ailments that limit their everyday activities and threaten their future. Other studies have found that women objectively have more illnesses and ailments compared to men at the same age (Thorslund et al 2004).
Other studies have also found that older people regard independence and having control over their circumstances as crucial (Hansen et al 2002, Gabriel and Bowling 2004, Dunér and Nordström 2005, Hammarström and Torres 2007). Among older people living at home, who were asked about their quality of life, independence primarily meant being able to walk and have good mobility, though another important matter was not having to depend on others in their everyday lives (Gabriel and Bowling 2004).
The changes that have taken place in eldercare mean that formal help from the welfare state is now more obviously connected with illness and a need for extensive care, which in itself implies great dependency on the part of the individual. From the point of view of the informants, it is too great a step to think of themselves as being that dependant in everyday life, so they instead brush the thoughts away. The connection between public help and dependence makes the thought of getting help problematic. The informants primarily have negative expectations concerning home help and a negative impression of how eldercare is functioning. That home help and eldercare have both shifted from being help for the many to help for a smaller, more selective group of care-demanding people, i.e. the most frail, means that such help can be regarded as more stigmatizing. That is to say, now mostly older people who definitely cannot manage by themselves are entitled to help: such help is thus now to a great extent connected to illness, dependence and the end of life.
Unlike other informants, the two informants who already receive public home help from the municipality appreciate the service and believe that it helps them retain some kind of independence by facilitating their everyday lives. The meaning of independence changes when one’s own situation changes. Independence initially means managing by oneself in everyday life. When health and mobility changes and deteriorates home help can be a strategy for keeping some of one’s independence and continuing to live at home. Other studies have also demonstrated that it is important to keep one’s independence as long as possible (Dunér and Nordstrom 2005, Gabriel and Bowling 2004).
Blomberg and Petersson (2004) argue, as mentioned above, that as concerns eldercare, there is a widening gap between what citizens expect and what they actually get. What was earlier a universal right to services has now become selective. For the informants it is the other way around: because they now have low expectations of eldercare there may be a correspondence between what they expect and what they will get in the future. They know that eldercare is not for them as long as they are relatively healthy and capable of managing on their own. The informants are rather unsure of whether the help will be there when they need it. As citizens they have already accepted that elder care is selective. Their ideas about home help and eldercare in other respects have been affected by alarmist coverage in the mass media regarding neglect and by sort of help their neighbors get. They are uncertain about whether the quality of the help they eventually get will be acceptable.
What is changing in the Swedish welfare state from the perspective of older people themselves? Universal reforms such as the pension system have benefited the situation of older people as has housing policy since the Second World War. Other parts of eldercare such as home help have gone from being a universal to a more selective right. For temporary help in their everyday lives the informants rely on their children, but not when it comes to personal hygiene and care. In the Swedish welfare state of today older people must manage their lives by themselves even at very advanced ages and must rely on offspring and family. The trend to defamilization can be called in question, at least as regards eldercare.

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