Distributed agency in financial tasks of older people with long-term care needs

Abstract

The ability and knowledge to manage financial tasks may be compromised in old age, especially when the need to navigate the care and social benefit systems increases. Managing financial tasks may consist of a variety of actions of both the older people themselves and their representatives, often family members. This study explored how financial tasks related to the care and everyday life of older people who need long-term care are managed by using the ideas of modalities of agency and distributed agency. We analysed interviews of 19 older persons and their family members with a qualitative case analysis. All the older persons who participated in the study distributed the agency in financial tasks among their family members, but to different levels and for different reasons. We identified three types of distributed agency – inevitable, assimilated and minimal distributed agency – in which the older persons’ knowledge about financial tasks and their ability to manage financial tasks differed. Within these types, the cases differed in terms of the know-how of the family members and the reasons why the older people’s knowledge about financial tasks or their ability to manage their financial tasks were diminished. We conclude that older persons with long-term care needs require help in regard to financial tasks, and the older people’s and their family members’ ability to manage financial tasks could be enhanced by making the benefit systems and online banking more user-friendly and by improving the help from care staff.

Background

The ability to manage financial tasks in old age may be compromised due to age-related conditions and diseases, such as sensory impairments, loss of fine-motor skills, cognitive decline, tiredness, ad so on (Marson 2001; Tilse et al. 2005, 2007). Along with these conditions and diseases, older people may lack confidence in conducting financial tasks like paying bills and managing assets (Tilse et al. 2005), especially as these tasks nowadays require running errands online (Raijas and Saastamoinen 2015). In addition, with a diminishing ability to manage financial tasks, older people face new demands: they need to familiarise themselves with and navigate the complex care and social benefit systems because of their increased care needs. In this study, we explore how older people with long-term care needs cope with their financial tasks, whether anyone is helping them and how.

Managing financial tasks calls for financial capacity and literacy, and in older age, when a person has long-term care needs, it also requires both health-care literacy (MacLeod et al. 2017) and aged-care service literacy (Rees et al. 2018). Marson (2001) has identified three elements of financial capacity: (1) declarative knowledge, referring to the ability to describe financial concepts; (2) procedural knowledge, which refers, for example, to the ability to carry out fine-motor skills needed in tasks: and (3) judgement, referring to the ability to make sound financial decisions. Of these, the first and third could also be called financial literacy. In addition to daily financial tasks, older people need to know about payments and possible benefits related to care. Rees et al. (2018) defined aged-care service literacy as the ‘knowledge, skills, and ability of older people to seek and use services they need’. Aged-care service literacy and health-service literacy connect when health- and aged-care services interact, as they often do in the case of older people (Rees et al. 2018). Thus, managing financial tasks in old age with long-term care needs requires declarative knowledge, skills and the capability to carry out daily and care-related financial tasks and the ability to make decisions related to these. When some or all of these requirements are not met, older people need help from others. Like older people with long-term care needs, their representatives also need the knowledge and abilities mentioned already.

There is no clear-cut point when an older person’s ability to manage financial tasks ends (Pinsker et al. 2010). Thus, the ability of older people to perform financial tasks may either slowly diminish or be lost suddenly and permanently (see Tilse et al. 2005). If older people have any relatives, they are the ones who often take on financial tasks (Tilse et al. 2005). In Finland, managing financial affairs on behalf of another is strictly regulated. Older persons with sufficient cognitive ability can authorise a relative or other close one to manage their financial affairs at the bank or apply for benefits. These authorisations require the identification of the assignor. Older persons can also prepare a continuing power of attorney and name a person who will have the right to manage their affairs if they later become unable to manage these themselves. The continuing power of attorney is recommended as it is a more flexible and lighter way of organising the management of affairs than appointing a guardian. To appoint a guardian is a measure of last resort and used only if the person cannot manage their affairs due to health issues and the affairs cannot be managed in any other way. (Digital and Population Data Services Agency 2024.) The above-mentioned strict regulations with official identification procedures are important means to prohibit financial abuse of older people, but they are still insufficient. Financial abuse, where the perpetrators are often close family members (Luoma et al. 2011) and the victims are most likely those with poor health (O’Brien et al. 2016), is occurring in Finland too.

Managing the financial tasks of older people may be a set of actions that are affected by the older people and other actors who all could have different roles, interests and abilities. These shared actions can be examined through the idea of distributed agency (Enfield and Kockelman 2017). In social theories, agency refers to people’s capability or ability to be the originator of acts (Cleaver 2007). However, agency, solely as an individual phenomenon, has been criticised for its assumption that agents are autonomous, independent and reflexive actors (Burkitt 2016). Thus, optional views are presented, such as those of distributed agency, relational agency (Burkitt 2016) and shared agency (Bratman 2014), which stem from the understanding that many acts or practices are only possible through joint actions. Enfield and Kockelman (2017)defined a distributed agency as a combination of individual characteristics, joint actions with one or several people (actors) and the contextual factors that enable or hinder these actions. Individual characteristics that may influence how the agency is formed are both external (objective) characteristics – such as age, generation, socio-economic status and ethnic group – and internal (subjective) characteristics – such as capacities, abilities, knowledge, necessities, feelings and willingness (Jyrkämä 2008). Jyrkämä (2008) called the former characteristics the coordinates of agency and the latter the modalities of agency. In addition, the characters and actions of people are affected by their lifecourses and previous actions, that is, their previous habits, rituals, customs, routines (Jyrkämä 2008) and structural environments (Emirbayer and Mische 1998, 970).

Distributed agency highlights that people are inherently interdependent, a quality that strengthens in old age. However, while distributed, shared and relational agency are commonly used for studying joint actions among a variety of groups of people in different contexts (Blackler and Regan 2009; Clark 2021; Romakkaniemi and Järvikoski 2012; Sairanen 2020), in ageing studies these theorems seem to be adopted rarely (see, however, Jacobs 2019). Instead, old age studies have acknowledged that, for example, older people with dementia can also demonstrate agency as long it is understood more broadly than as rational and individualised actions (Boyle 2014). In such cases, distributed agency is a valuable theorem. By following Enfield’s (2017, 9–10) idea of distributed agency, people can be seen as essential actors in all actions related to themselves; for example, even though a person with severe cognitive impairment cannot actively participate in their care or financial tasks, they still have agency because the actions of other people are anchored to them.

In this study, we explore how daily and care-related financial tasks of older people who need permanent long-term care are carried out using the ideas of modalities of agency and distributed agency. The research question is: What forms of distributed agency can be identified based on how older people with long-term care needs and their relatives demonstrate their agency in financial tasks? This study builds on the core assumption that agency in financial tasks can be distributed between older people, their family member(s) and other trustees, including care staff. Distributed agency is also contextual (e.g. structures like benefit systems and banking practices influence financial tasks), temporal and affected by the previous lifecourses and habits of the people involved. Thus, along with the modalities of agency (i.e. an individual’s inner characteristics), the analytical focus in this study is on contextual enablers and disablers that may affect these modalities and on distributed agency in financial tasks.

The study context: long-term care arrangements and the demands of financial tasks

This study was conducted in two municipalities in Finland. The Nordic countries are known to have universal tax-funded care systems in which the redistribution of care costs seeks to ensure social justice. However, elder care has been de-universalised in all Nordic countries, and more so in Finland and Sweden (Szebehely and Meagher 2018). Related to the de-universalisation, elder-care politics and policies in Finland and Sweden have been found to follow neo-liberal ideas and trends (Hoppania 2018; Skyrman et al. 2023). For a few decades now, policies in Finland have aimed, for example, to curb public costs and de-institutionalise long-term care by emphasising care at home and designating nursing homes as round-the-clock service houses that are defined as living at home. Although de-institutionalisation has value in highlighting the appropriate living arrangements, it has also resulted in the responsibilisation of older people (Anttonen and Karsio 2016). Both home care and round-the-clock service houses increased older peoples’ responsibility to manage and fund their own care (Anttonen and Karsio 2016; Kalliomaa-Puha and Kangas 2015). Compared to other Nordic countries, long-term care users in Finland pay the largest share of the costs of care, and this share has increased due to the shift from nursing homes to service housing (Szebehely and Meagher 2018).

Home care and round-the-clock service houses include publicly organised services that were previously the responsibility of approximately 300 municipalities (Keskimäki et al. 2019; Ministry of Social Affairs and Health 2021) and since the beginning of 2023 have come under the responsibility of 21 Wellbeing Services Counties (WSC). These long-term care arrangements have been argued to be inexpensive for the municipalities/WSCs. Still, these are not inexpensive for the state as the care receivers can apply for allowances from the national Social Insurance Institution (SII) (Forma et al. 2023). Older people in Finland have rights to different kinds of welfare benefits and reimbursements of care costs, which the SII pays. Housing allowances for pensioners are meant for pensioners with a low income to cover their living costs, and care allowances are intended to cover the medical and care expenses caused by illness or disability. Monthly income influences the sum of the housing allowance, while the degree of the disability determines the sum of the care allowance. These allowances are granted to older people living in their own or rented houses or apartments and those residing in round-the-clock service houses (Social Insurance Institution 2015).

In addition to SII allowances, older people may receive several reimbursements. Individuals receive compensation for out-of-pocket payments at the time of health-care service use or medicine purchases when the total amount meets the annual payment ceilings (i.e. the limits for the maximum amount of annual payments). For example, in 2021 the ceiling for prescribed medicines was €579.80 and for travel to health care it was €300. When the client has paid the maximum amount in a calendar year, travel for the rest of the year will be reimbursed in full; for medicine, the client pays €2.50 per purchase (Social Insurance Institution 2021a, 2021b). The reimbursements for travel need to be applied for from the SII, while the reimbursement for prescribed medicines is automatic when purchasing the products. There is also a payment ceiling for publicly organised health-care services (in 2020 it was €683). A patient needs to follow their health-care payments and apply for reimbursement from the WSC (previously from the municipality) after reaching this ceiling. Social and health-care payments should be reduced or not charged if clients have difficulties in paying them (according to the Act on Client Charges in Healthcare and Social Welfare 734/1992, § 11). Also, the SII or WSCs could pay income support to cover the payments of those in need.

As seen already, then, the system for care and living allowances and reimbursements is complex: persons have to claim some benefits and reimbursements from the WSC (previously from the municipality) and some from the SII, while others (e.g. reimbursement for prescribed medicines) come automatically. In addition, some benefits are dependent on income or the level of disability, and some are fixed for all in need. These benefits and reimbursement practices could be unclear for many. Many older people may have no knowledge of the benefits and reimbursements to which they become entitled when they have long-term care needs. From this, it may follow that older people may not claim the benefits to which they are entitled (Virrankari et al. 2021). The situation where individuals eligible for social protection do not end up benefiting from it is referred to as non-take-up. Non-take-up is a common phenomenon in many countries, and the underlying reasons have been found to be, for example, lack of information, costly or complex procedures, administrative barriers or errors, and low digital literacy (DeSchutter 2022).

In addition to the complex benefits system, daily financial tasks have become challenging for older people due to extensive changes in banking services and practices in Finland (Raijas and Saastamoinen 2015). The number of bank offices and their opening hours have been diminished, and online services have increased. These changes have affected older people most severely, as they are most likely those who did not have an online bank service account. People without online access can pay their bills in bank offices using direct payment envelopes that can also be filled out at home and sent to the bank, for example, with the help of somebody (Raijas and Saastamoinen 2015, 24).

Data

The interviews of 19 older persons and/or their family members were conducted from February to May 2020 by one of the authors (PT). The interviews provided part of the data of a pilot study (Forma et al. 2023 ) where older people’s care costs were assessed for a two-month period. The older persons were selected from two medium-sized municipalities in western Finland with the help of managers and nurses of home care and service-house care in the municipalities. The selection criteria were that an older person was a client either receiving home care or at a service house (with 24-hour care) and could be interviewed alone, with a family member, or a family member or a guardian could be interviewed instead of the older person. By including both home-care and service-house clients as well as allowing surrogate respondents, we aim for a sample that provides insight into a diverse group of older people with long-term care needs.

Based on the inclusion criteria, managers selected the potential participants and the nurses distributed handouts of the study to them and gathered lists of those who were interested in participating. The managers offered the research team the contact information of older persons themselves, their relatives or their guardians, depending on who they thought was the right person to contact (via encrypted email to PT). One of the authors (PT) recruited the participants. Recruitment was difficult, and many of the suggested persons, their representatives or their guardians refused after hearing more details of the study – including the need to keep a diary on weekly costs. To increase the number of participants, one of the authors (PT) went to talk about the study at an event organised for home-care clients, which resulted in four more participants.

Of the 19 older persons, eight lived in a private home and were the clients of regular home care while 11 lived in service housing. Due to the common eligibility criteria for long-term care, the functional capacity of all the participants was impaired to some extent. Five of those who lived at home participated in the interviews alone and three had family members with them in the interviews. Of those older persons living in the service houses, three participated in the interviews alone, one with a family member and in seven cases family members were interviewed alone (see Table 1). Based on the information provided by the interviewees, one family member was a guardian and two had continuing power of attorney, while the legal authorisation of the others remained unclear.

Table 1. Description of the interviewees

Three interviews were organised for each participant during the two-month period due to the pilot study design. The interviews were conducted as semi-structured interviews. In the first round of interviews, the themes related to living arrangements, the need for help, income and benefits, the costs of living and care, and managing financial tasks. The second and third rounds of interviews were organised mainly to follow up on how study participants had managed to fill out the diary on weekly costs of care. The interviewees were also asked whether there had been any changes regarding the first-round interview themes (e.g. due to the Covid-19 situation) and whether they wanted to add something that was not mentioned before.

The first interviews were organised face-to-face either in older people’s homes or in service houses, and they lasted 24 to 71 minutes. The second-round interviews were check-up phone-calls lasting from 4 to 25 minutes, and the third ones were follow-up interviews conducted by phone due to the Covid-19 outbreak, and these lasted from 19 to 46 minutes. In most cases where both the older person and a family member were interviewed, they both participated in all rounds. Two participants dropped out after the first interview, but their interviews were analysed as they did not cancel their participation. The final data consisted of 54 interviews that were recorded (by using a password-protected and encrypted digital voice recorder) and transcribed verbatim (in Finnish).

Ethics

Ethical approval for the pilot study was obtained from the Regional Ethics Committee of the Expert Responsibility Area of Tampere University Hospital (decision number R19092). Research procedures were conducted according to the General Data Protection Regulation (European Commission 2018). The participants were informed of the option to cancel the interview or withdraw from the study. They were also informed about the data handling, saving and archiving procedures. Each interviewee gave independent informed consent for the interview and its recording. To ensure the privacy and confidentiality of the interviewees, pseudonyms are used for all persons and locations.

Qualitative case analysis

A qualitative case study approach was applied in this study (Baxter and Jack 2008; Järvensivu and Pulkki 2020). An older person and their family member were considered and analysed as one case. We first analysed the interviews as separate entities to grasp the details of each case. After that, we looked for characteristics that connected the cases and formulated groups based on the similarities. Finally, we analysed the cases within each group more closely. In each step, the first author (JP) made the initial analysis, which was discussed and commented on thoroughly within the research group.

The first step in the analysis was data-driven, and its purpose was to identify relevant text extracts – that is, those that relate to the research question – from the transcribed interviews. These included mentions where the interviewees talked about income, benefits and costs and when they presented actors and described actions related to financial tasks they or others carried out. In addition, different types of enablers and disablers related to financial tasks were detected from the interviewees’ descriptions. These included the structures, environment or life history of the interviewees that were either implicitly or explicitly mentioned as influencing their financial actions.

After identifying text extracts, they were coded (labelled) and categorised (similar codes were grouped) according to the agency modalities (Jyrkämä 2008); thus, the second step in the analysis was theory-based. Based on the extracts, we first analysed whether the older persons had the capacity, ability, willingness and know-how to carry out different financial tasks. Analytical questions at this point focused on: what the older persons knew or did not know, what they could or could not do, what they wanted or needed to do and what they did not want or need to do, and how they felt about financial tasks. After categorising the extracts, we noticed that the most apparent agency modalities – and, in many cases, the only modalities – were the ability to maintain financial tasks and knowledge of financial matters. Thus, in the third step, we focused on these modalities for older persons. To analyse the findings forward, we formed a fourfold table from these modalities (see Figure 1). We placed each older person into the table based on how well they knew about, for example, their monetary assets, income and expenses, benefits and supplements, and to what extent they were able to carry out or make decisions on their financial tasks.

*Grey box = service-house resident; white box = home-care client

Figure 1. The scope of ability and knowledge for financial tasks of older persons.

Based on the fourfold table, we formulated three groups: older people with limited knowledge and abilities, older people with some knowledge but diminished abilities, and older people with good knowledge and mostly good abilities. We used these three groups as the basis for the three types of distributed agency. The final step of the process was to analyse the cases within these groups further. We analysed the knowledge and abilities of the family members regarding financial tasks and the role of care staff whenever possible based on the data we had. We also analysed the contextual factors that enabled or hindered older persons and/or their family members in managing financial tasks. As a result, we concluded three types of distributed agency that included somewhat similar and somewhat different cases. Cases are described in Table 2 in terms of the roles of the older persons, their family members and their care staff in financial tasks. Table 2 illustrates the similarities and differences between the cases.

Table 2. The roles of older people, their family members and care staff in financial tasks by the cases and the type of distributed agency

^a FM = family member.

Findings

We identified three types of distributed agency: inevitable distributed agency, assimilated distributed agency and minimal distributed agency. The cases within these types share the scope of distributed agency; namely, the older persons’ needs for sharing financial tasks were similar and were based on the scope of the knowledge and ability of these older persons (see Figure 1). However, there were also differences within the cases in each type regarding the knowledge and ability of the family members and enablers or disablers (personal and contextual factors) that define the knowledge or ability of either the older persons themselves or their family members. Table 2 and the text beneath present these differences in more detail. Text extracts were used to illustrate and verify the findings; all the names have been changed.

Inevitable distributed agency

Most of the older people (eight) who lived in a round-the-clock care facility and two who lived at home had impaired ability to take care of their financial tasks and limited knowledge of doing so (see Figure 1). In addition, most of them could not participate in the interviews, and their family members were interviewed instead. In some cases, the older person joined the interview but their participation in the finance-related discussion was limited (see Table 2). It was evident that these older persons could not take part in the financial tasks, and they needed to rely on their family members who carried out the tasks and most likely also made all the decisions.

All the family members were somewhat familiar with paying the older person’s bills and performing other financial tasks. The possibility of using a computer and being able to access the older person’s bank account were mentioned as enablers for carrying out these tasks (see Table 2). For example, Alina (the family member of an older person receiving home care) mentions that a bank card for her older relative’s bank account was important to take care of the financial tasks: ‘Since I got a card for his bank account, I can use that to pay for his groceries directly, and I don’t need to go to a [bank office] to get cash. So this is easier now.’

There were, however, differences in how well the family members knew the benefits and payment ceilings available for the older people and how capable they were of claiming those benefits. Some family members knew the allowances and benefits well and how to claim them (see Table 2). For example, in the text extract below, Antti (the family member of an older person in a service house) says that he has familiarised himself with the benefits, the systems and so on. He also seems to have the readiness and the mettle to seek out more information and help when needed. He refers to the use of a computer, which is one of the enablers when managing financial tasks:

Interviewer: Do you find handling payment and benefit issues like this and others difficult?

Antti: I can say that, in general, people who are not used to dealing with them will surely wonder what they mean.

Interviewer: So, what do you think?

Antti: Well, I have studied them, and yes, I am – I think I am relatively well on track of – let’s say over the past year – getting to the bottom of what this is.

Interviewer: Yes, yes … if something becomes more difficult, does it feel like you are getting some help or support?

Antti: Well, yes. Of course, I can find everything on that computer – I find a lot. I [also] go to a geriatrician, for example, or to this elderly care manager. Then I say ‘The situation is this … How should I act here?’ Yes, these [the help and support] will surely be available if you dare to ask for them and know where to go.

Some of the family members knew about the care-payment ceilings and that their older relative obtained monthly benefits, and they might have known the sums, but they had difficulties in naming or applying for these (see Table 2). The below extract from an interview with Aila (the family member of an older person receiving home care) sums up the uncertainties expressed by many family members about their old relative’s care benefits:

Interviewer: How about the living allowance, pensioners’ care allowance, or any other benefits [– does your relative get any of these]?

Aila: Not to my recall. Or does she …?

Interviewer: From the SII?

Aila: From the SII. The pensioners’ benefit. She gets some kind of care support. But now I don’t … If I remember correctly, it is part of the total sum of income [she gets in a month].

Family members like Arto (the family member of an older person in a service house), in the next example, whose older relative was a client in a service house, said that they rely on and trust the care staff when applying for the benefits when they themselves did not have enough knowledge. In contrast, family members whose older relative was a home-care client did not receive any help regarding the benefits – below are examples from Arto’s interview and an interview with Alina (the family member of an older person receiving home care):

Interviewer: Well, do these payments and reimbursements feel tricky to handle?

Arto: Well, the payments are easy to handle. It’s not that difficult, but these care allowances and other allowances have been applied for by the service house [staff] and I haven’t gotten involved in them, and of course, I haven’t been able to apply for anything else when I don’t know what kind of subsidies exist and how it would be possible to get all of them.

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Interviewer: Did you get any help [for the allowances and benefits]? Or do you manage these by yourself?

Alina: I didn’t get any help from anywhere.

Thus, within the cases falling under inevitable distributed agency, there was a difference in the enablers of financial tasks for those living in a service house and those living at home, receiving care: while the family members with older relatives in a service house had support from the care staff, similar help was not available for those with older relatives living at home and receiving home care, despite the need.

Assimilated distributed agency

Compared with the first group, in the assimilated distributed agency group, the older people (six) were more aware of their financial circumstances (see Figure 1). Four of them were home-care clients, two lived in a service house and all of them participated in the interviews either alone or with a family member (see Table 2). They were able to talk about their income and bills, and some of them concretely participated in financial tasks by, for example, checking from their account statements that bills were paid correctly. However, even though they seemed to be able to make decisions regarding their daily financial matters, they were not able to carry out the tasks by themselves and received a great amount of help from their relatives for different reasons.

Erkki, for example, a home-care client who had a good knowledge of his financial affairs, said he needed help due to his physical disabilities and because he had no computer. He described a situation where he had to hand over the financial tasks to his son:

Erkki: Yes, I would take care of everything myself if I could get to the bank. I have nothing that I can’t take care of. But as I can’t get to the bank in a wheelchair, I have had to transfer everything to [my son] Antero. … It was a must. But I look over all the account statements, so I do know when I have money and when I don’t. Exactly that … But when you can’t get to the bank to take care of things, then you can’t. It would be good to have a computer, but I’ve been working all my life with computers, so when I retired, I said, ‘Now I do not want to have a computer.’ And now it would be good to be able to pay the bills, and everything is taken care of through computers [nowadays].

In other interviews, the lack of a computer was also mentioned as a reason why help from relatives was needed. Still, as can be seen in the extract below, even though Olli (a home-care client) had a computer of his own, it was not enough for him to carry out his financial tasks due to difficulties in seeing and understanding the official guidelines that are presented in letters from, for example, the SII:

Interviewer: Well, who then handles these practical matters for these payment ceilings?

Olli: Anni and Ari.

Anni (a family member): Yes.

Olli: They’re hard. The computer – I don’t really see it properly.

Anni: Yes, it is so hard to understand what they are …

Olli: Yes, that’s it. I don’t understand what they mean. That’s why Anni reads those letters to me …

Anni: It’s a bit like finding that core meaning there because there are long letters that you don’t understand anything about and then trying to find out together what the core is …

Interviewer: Yes. Well, do you find these payment ceilings and benefits difficult?

Anni: No, and so, because I’m working with them, and it’s grounded on the fact that, first of all, I’m not afraid of them. That’s a good starting point. Then, if you don’t understand something, there is some place to call, and a lot of patience and perseverance is needed that you will find the answer.

Olli: How do older people cope with these things, people my age? When I don’t even know what they mean, how do they? They have no computer and no [other] way [to know].

Financing tasks were quite well known by all the older people in this group, while claiming reimbursements or benefits was more or less unfamiliar. However, as the above extract shows, Olli’s family member had good knowledge of these, and she actively obtained the benefits because this was part of her own job. For others, support from family members related to the benefits was not that clear. For example, in the next extract home-care client Matti does not know if his trustee is familiar with the existing benefits.

Interviewer: Are these things regarding ceilings familiar?

Matti: No.

Interviewer: Who handles those payment ceiling matters?

Matti: I don’t know who takes care of them. Is it – Yes, [my son] may be aware of them in some way.

Interviewer: Your son might know. How do you feel about these benefit issues? Are they easy, difficult and appropriate?

Matti: I can tell you it’s a hell of a hassle because I don’t know exactly where to get these [benefits]. I have no one telling me that I could get something.

Interviewer: No one helps with them?

Matti: [laughs]

Interviewer: Do the nurses tell you anything?

Matti: Who?

Interviewer: The nurses?

Matti: I have never asked them, ever. I am completely unaware of these benefit issues.

From the extract above is seen that Matti has not asked for help from the home-care nurses. Lasse, who lives in a service house, on the other hand, said that he has received help from the care staff:

Interviewer: Do you get any benefits from the SII?

Lasse: No. We made some kind of application with the nurse here to cover the [service] house payments, but I can’t remember what it was called, and I haven’t got an answer yet.

Thus, similarly to the cases under inevitable distributed agency, under the assimilative distributive agency those older people who lived in a service house had support in applying for benefits from the care staff, while those older people living at home and receiving home care had not been informed of the benefits they were entitled to.

Minimal distributed agency

Our data contained three older persons with relatively high ability and knowledge to take care of their financial tasks almost entirely alone (see Figure 1). However, they needed help carrying out some tasks for different reasons. In this group, Maire lived in a service house while Urho and Reino lived at home.

Maire managed her financial tasks very independently and successfully – for example, she had stocks and funds of which she was very aware. She wrote down all her income and expenses in a notebook, perhaps due to her former occupation related to financial tasks. Despite her abilities and knowledge, though, she still got help from a family member about her age when applying for benefits. Help was necessary due to the complexity of the benefit systems:

Interviewer: How about the different benefits and subsidies you can get? Are these difficult to understand?

Maire: Applying for them feels a bit difficult. Fortunately, Annukka [a family member] has taken care of them.

Urho and Reino had good knowledge about both daily and care-related financial matters (bills, benefits, etc.). Their need for help stemmed from the changes to banking systems that have influenced their abilities to continue carrying out their daily financial tasks.

Reino, a home-care client, used a direct payment service to pay his bills. In doing this, he got help from his child or home-care staff who mailed direct payment envelopes after he had prepared the necessary papers for them. He was willing to pay all his bills by using this method that he had got used to, but it was no longer an option for all his bills due to online banking systems, as he describes here: ‘I am annoyed because not everyone accepts direct payments … everything changes. It is assumed now that everyone has – that they can pay. It has not been taken into account that there are a lot of older people. Most older people are not able to pay electronically but they pay with paper bills.’

While Reino preferred traditional paper bills, Urho, another home-care client, was used to paying his bills on his computer. However, he said that, just recently, he started to need help due to the complexity of the systems and concepts used in online banking applications:

Urho: Now there are problems. I paid the bills using my computer for a long time, but now it came … I got, or bought, this phone, which is a rather versatile tool, but there are things to learn. This also makes the bills payable. But now, last time … I need my son’s help all the time in using and learning about the computer, and now, it’s my son’s wife. Yesterday the bills were paid off, she was helping and was paid with this phone. The vocabulary these computers use, they are – there is no Finnish language, and those words, their meaning … you have learned what some word means, but when you see the word, it is something completely different, and that word does not mean anything at all. So, I am very easily in a fog when there is such a word, and I don’t know how I need to react to it!

As a summary, even though older persons under minimal distributed agency had relatively high ability and knowledge to take care of their financial tasks, all of them needed help with care-related financial tasks and two of them with daily financial tasks.

Discussion

Distributed agency in financial tasks was evident among the older people who needed long-term care. All the older persons who participated in this study needed help with their financial tasks, but with varying scope and for somewhat varying reasons. We identified three types of distributed agency – inevitable distributed agency, assimilated distributed agency and minimal distributed agency – in which the older persons’ knowledge and ability regarding managing financial tasks differed. Older persons in the inevitable distributed agency group had declined declarative knowledge, skills and ability to carry out both daily and care-related financial tasks. They were also most likely incapable of making solid financial decisions. In the assimilated distributed group, older persons had good knowledge, and most likely the ability to make decisions on their daily financial affairs, but declined ability to carry out these tasks themselves and limited knowledge of care-related financial issues. Those in the minimal distributed agency group had relatively good knowledge and ability on both daily and care-related financial tasks, but they also needed help to handle some financial matters. Within the three types, the cases differed in terms of the know-how of the family members who helped their old relatives, the enablers and disablers, and the reasons why the older people’s knowledge or ability to manage their financial tasks was diminished.

All the participants had a family member (or family members) to take care of their financial tasks, as is often the case whenever people have relatives (Tilse et al. 2005). The family members’ role was most clearly seen in cases grouped under inevitable distributed agency and second clearly in cases under assimilated distributed agency. All family members have good knowledge and ability to carry out the daily financial tasks, but their knowledge and thus ability to help with care-related financial tasks, namely reimbursements and benefits, varied a lot. Lack of acknowledgement of benefits is a known phenomenon both in Finland (Virrankari et al. 2021) and in other countries (DeSchutter 2022), and could cause structural inequalities between older people. Even though people have the right to benefits and reimbursements, access to these is probably unequal due to the lack of older persons’ or their representatives’ aged-care service or health-care literacy (see Rees et al. 2018). This kind of structural inequality in applying for benefits and reimbursement is likely to increase even more when neo-liberal elder-care policy increases the number of older people with long-term care needs living at home as well as their and their family members’ responsibilities (Anttonen and Karsio 2016). Overall, neo-liberal policies that emphasise individual responsibility and reduce the responsibility of the public sector increase the demand for distributed agency between the older people in need of long-term care and their family members. Older persons that don’t have relatives would need formal help.

Agency regarding financial tasks was distributed to care staff among those living in the service houses. In the service houses, the care staff assisted with benefit applications, while the home-care staff in the cases where the older person was a home-care client did not provide any such assistance. At the time of the study, older people in Finland had the right to guidance and counselling on social welfare benefits that should be provided by the municipality where they live (Social Welfare Act 419/2014, § 13, Finlex 2014). This right was realised only among those who lived in service houses, where there are usually social workers or practical nurses on the staff who have knowledge about the benefits. For those who lived at home, the municipalities may have offered information desks or counselling centres, but these were very likely out of the reach of older people with long-term care needs. It is not clear whether WSCs have a similar responsibility to offer counselling and assistance on benefits, as legislation on this is not yet dated. However, it is certain that the need for these kinds of services is essential and will continue to grow in future since the number of older people eligible for the benefits and reimbursements is increasing.

The results regarding minimal distributed agency showed that even though older people may have good knowledge about daily financial tasks (i.e. good financial literacy) (MacLeod et al. 2017) and financial capacity (Marson 2001), complex benefit and reimbursement systems, renewed banking practices and unclear guidance could hinder them in managing their finances alone. One reason for the need to distribute the tasks was that the older people did not have computers or access to online banking. However, the findings imply that it was not just the lack of equipment (such as a computer or smartphone) but also the terminology used in internet-based banking applications that could hamper their utilisation. Thus, in these cases, the applications’ usability was the problem.

As with previous studies, our study did not offer a clear-cut point where an older person’s ability to manage financial tasks ended (Pinsker et al. 2010); for example, each distributed agency type was found in both home-care clients and service-house residents. Previous studies have shown how older people may consider financial decision-making to be part of their independence (Pirhonen et al. 2016; Tilse et al. 2007; Wilson 1993) and that they are unwilling to hand the power over financial tasks to someone else (Tilse et al. 2007). However, older persons may willingly relinquish complex financial tasks to others when their health deteriorates (Tilse et al. 2007), as far as they can still make such a decision. In this study, only one interviewee explicitly said that he had handed over the financial tasks against his will but understood that it was the only choice in the given situation where he was not able to go to the bank office or pay the bills on a computer. In some other interviews, it was mentioned that there was no other option because of the deteriorated health and functional capacity of the older person. In addition, many interviewed older persons expressed their gratitude to their family members or care staff for dealing with the tasks. However, we could not state how many of them had relinquished financial tasks unwillingly or willingly. Also unclear are possible cases of financial abuse, which in previous studies have been observed in alarming rates, especially among elderly people in poor health(Luoma et al. 2011; O’Brien et al. 2016).

Based on the findings, the need for a clear benefit and reimbursement system is evident as the complexity of the existing system was the biggest obstacle to managing financial tasks for both older people and their family members. Clear and easy application procedures would be crucial in many countries to tackle the non-take-up of social protection (DeSchutter 2022), but how to improve the procedures depends on each country’s particular social security and health and social-care systems. One way to simplify the Finnish system would be to centralise all care-related benefits and reimbursement applications through one organisation, either the SII or the WSCs. This kind of ‘one-stop shop’ would make the system easier from the applicant’s point of view, even if funding would still come from both the SII and the WSCs. Another way to simplify the system would be to automate reimbursements after reaching the annual payment ceilings. Now, reimbursements for prescribed medicines are automatic, while reimbursements for health-care service fees and travel to care must be applied for separately. Automation of benefits has also been presented as a means of tackling the non-take-up of social protection across countries (DeSchutter 2022).

Lack of awareness of benefits is one of the main reasons why people don’t apply for them (DeSchutter 2022). Counselling and assistance in claiming benefits and reimbursements should be provided for all, but especially for older people with long-term care needs living at home and their family members. One straightforward way to add knowledge would be to send a letter to all new home-care clients, servicehouse residents, and their official representatives, presenting all the benefits and reimbursements they are entitled to. Better counselling and assistance for older people and their family members are needed in other countries, too. For example, in Australia, the need for the formal assistance of family carers whose responsibilities for financial tasks have increased has been recognised (Tilse et al. 2005). In addition, our study shows that the possibility of receiving and paying paper bills from home is important for home-dwelling older people who cannot move around outdoors easily and have no internet access. In addition, it is crucial to enhance the usability of online banking applications for those older people who are otherwise able to manage their financial tasks. As online banking is a worldwide practice nowadays, these suggestions most probably pertain to other countries, too.

Strengths and weaknesses

The strength of the data is that the study participants present both home-care and round-the-clock service house clients. Thus, the data contained information on older persons with varying long-term care needs, from those who still managed to live at home to those service-house residents who could not partake in the interviews themselves. In some cases, our data contained both the older persons’ and their family members’ points of view and, as such, offered a rich description of distributed agency. For the topic of this article, it would have been beneficial if there had been family members’ perspectives for all cases, but this was not part of the original pilot study plan. Further, interviews for both would not have been possible in all cases anyway, as some of the older persons did not have sufficient capacity to participate in interviews. It is important to gain information from these most vulnerable older people, and this is possible only by using surrogate respondents (Aaltonen et al. 2021), as was done in this study. However, allowing family members to participate with the older persons could have impacted the dynamics and content of the interviews. For example, the presence of a family member may have changed an older person’s willingness to speak because they assumed that the family member would do it better (Aaltonen et al. 2021). Also, any worries about financial abuse could not be raised by the older persons in these interviews.

Using the idea of distributed agency is a strength of the study. It fits nicely for analysing financial tasks as it makes it possible to consider individuals, other actors and the context in which they act. Using the modalities of agency (Jyrkämä 2008) as a starting point for the analysis was also useful in pointing out the basis for distributed agency, namely, the scope of the ability and knowledge the older people had regarding financial tasks. Also, by focusing our analyses on the contextual factors of agency, we found nuances in the differences that enabled or disabled financial tasks within the types formulated. Different socio-economic circumstances, for example, different amounts and natures of assets, and the roles of gender are examples that may have an impact on how agency in financial tasks is distributed and could be important topics to study further. Previous studies have shown that older people’s agency should be understood more broadly than as an individual’s capacity to act according to their will (Boyle 2014). Thus, distributed agency could be a purposeful theorem for a variety of topics in old age studies.

Conclusions

Based on the literature, we summarise that managing financial tasks at an older age with long-term care needs requires declarative knowledge, skills, the capability to carry out both daily and care-related financial tasks and the ability to make decisions related to these. However, our empirical study suggests that older persons with long-term care needs have difficulties fulfilling these requirements alone, and thus they need help from others. Therefore, all of the participants in this study distributed the agency for financial tasks to their family members but to different levels and for different reasons. Family members had good abilities and knowledge to carry out and make decisions related to daily financial matters, while abilities and knowledge required to manage care-related tasks varied. The complex benefits system was the most evident disabler for both the older people and their family members when it came to carrying out financial tasks successfully. In cases where older persons lived in service houses, their family members could turn to care staff if they needed help in applying for the benefits, while this option was not mentioned among the home-care clients. The online banking system was another obstacle to older people managing their financial tasks independently. The results are applicable in other countries with complex benefits systems and increased online banking. Our results offer insights for policy making, particularly in countries where neo-liberal elder-care policy has shifted responsibilities from the public actors to older people themselves and their relatives and where it is important to acknowledge that this is likely to add to their financial tasks and require capabilities and knowledge that older people with long-term care needs or their relatives do not have. The idea of distributed agency sheds light on various ways to share the financial tasks of older people with long-term care needs. In addition to financial tasks, there are several other situations where these people need to share actions with others, which could be beneficial to examine through the idea of distributed agency.