Filling the gaps? The role of voluntary organizations in supporting older people with severe mental illnesses

ABSTRACT

Older people ageing with severe mental illness (SMI) usually fall in between mental health care and old age care services. The role of informal care in filling this gap is recognized. The role of other welfare providers, such as voluntary organizations, is unclear. The aim of this article is to analyze and discuss local voluntary organizations’ ability to recognize and respond to the needs of older people with SMI in the community.

11 local organizations focusing on mental illness, social care or old age were identified in a mid-sized Swedish city. Seven voluntary organizations participated in the study.

Our analysis revealed three overarching themes: ‘Age as a non-issue?’, ‘Public and voluntary sector (non)links’ and ‘organizational vulnerabilities’. Our results show that older people with SMI are to some extent also invisible in the voluntary sector. We were also able to discern differences in the ‘we-for-us’ organizations that provide support for their own members with SMI, and ‘we-for-them’ organizations that provide help to a broader group.

Overall, older people with SMI remain a relatively invisible as a group for the voluntary organizations. We discuss these findings in relation to the specificity of the group and welfare contexts of voluntary work in communities.

KEYWORDS:

• Older people
• severe mental illness
• civil society
• voluntary organizations

Introduction

International studies project that the population of older people with severe mental illness (SMI) will increase in the coming decades (Clifton, Marples, and Clarke 2013; NBHW (National Board of Health and Welfare) 2013). This implies a challenge for the provision of health and welfare services in many countries (OECD 2011), due the deficient understanding of the living situation and care needs of older people with SMI (Dautzenberg et al. 2016; Warner and Jenkinson 2013).

Research focusing on publicly organized services and care for older people with SMI conclude that this group falls in between psychiatric- and old age care and that there is a need for integrated services (Cummings and Kropf 2009; Knight and Sayegh 2011). A remaining question, however, is how the gap between psychiatric- and old age care is filled. While studies indicate that informal caregivers provide a substantial amount of care for older people with SMI (e.g. Cummings and Kropf 2009; Cummings and McNeil. 2008; Dawson et al. 2017), less is known about the role of voluntary organizations.

This article contributes to knowledge about local voluntary organizations as providers of support for older people with SMI. It is part of a larger research project investigating the living situation of this group and their formal and informal care constellation. With de-institutionalization, older people with SMI are expected to live autonomously in the community. Our questions in this article is to what extent local voluntary organizations focusing on mental illness, social care or old age identify older people with SMI as a target group, and how representatives of these organizations understand their role for this group concerning the provision of services and support.

Older people with SMI: in between two reforms

Mental ill health among older people is common, and national statistics from 2016 identifies 34 percent of those aged 65 years and above as having an ongoing psychiatric treatment or as using psychiatric drug, which is twice as much compared to the age group 18–64 years. In the Swedish population, 1 percent or a total of about 80,000 people, are suffering from SMI (NBHW 2013). In our study, we use the term older people with SMI to refer to individuals aged 65+ with a history of mental illness defined through a psychiatric diagnosis. We follow a specific definition of older people with mental health needs, that emphasizes lifelong experiences with mental illness and contacts with psychiatric care (O’Connor and Bruner-Canhoto 2011). By taking this definition, we exclude persons that have had an onset of psychiatric disease after 65 years, and people with age-related mental disabilities such as dementia.

In Sweden, two important reforms in the 1990s have changed living conditions for older people and people with mental illness respectively. First, the 1995 Psychiatric Care Reform heralded the closure of mental hospitals in Sweden and symbolized the last step to de-institutionalization that until then excluded people with mental illness. In line with the principle of normalization (Nirje 1969), this reform enabled people with mental illness to live in communities and participate in social life. Further, psychiatric care addressed by psychiatric clinics became differentiated from the social care for this group, such as home care or disability services, that are also publicly funded but are provided by local municipalities.

Second, the organization of old age care was also significantly reformed in Sweden in the 1990s, shifting the responsibility for long term old age care from the healthcare sector to local government. This reform brought increased focus to care provision for those in most need. Meanwhile, nursing home apartments were reduced to encourage ageing in one’s own home with public home help services for as long as possible. Private actors also entered the old age care sector.

Both the psychiatric care and old age care reforms were implemented in an era characterized by welfare state deregulation and at a time when market-oriented systems for organizing and providing welfare, inspired by New Public Management (NPM), were introduced. It is, however, important to keep in mind the Swedish context in the financing and provision of welfare services. Old age care is still largely financed by the state through taxes, although individuals can choose between public, for-profit and non-profit operators (Bergmark and Fritzell 2007; Gustafsson and Szebehely 2007; Jegermalm and Grassman 2013). It is also important to note that despite these reforms, Sweden has remained a welfare state with one of the highest public spending on old age care, at 2.3 percent of the GDP (OECD 2013).

Despite these two important reforms, there were unexpected consequences for older people with SMI, whose vulnerable situation became more apparent. The closure of mental hospitals highlighted the disadvantaged position of people with SMI in aspects such as housing, employment, financial situation and social isolation (Topor, Ljungqvist, and Strandberg 2016). Older people with SMI face bigger challenges, as they also have had lower levels of education, longer periods of unemployment in early adult life, and lower pension (Bülow, Svensson, and Hansson 2002). Critics of the old age care reform likewise pointed out the possible socio-economic inequalities between groups of older people (Szebehely and Meagher 2017; Ulmanen and Szebehely 2015). Older people with SMI are not only economically vulnerable, but also have smaller social networks from which to ask for informal care and support at home. The Swedish National Board of Health and Welfare acknowledged these problems and concluded in a report that care for older people with SMI should be prioritized, as there were deficiencies in the organization, recruitment, and training of staff specializing in geropsychiatric care (NBHW 2013).

The voluntary sector in Sweden: voice and service

The role of informal care in filling the gap between old age care and psychiatric care is well established, but not the role of other welfare providers such as voluntary organizations. Sweden, despite its large public spending on welfare services, has had a strong tradition of voluntary organizations in the civil society. Studies conducted between 1992 and 2014 establish that voluntary organizations in Sweden perform different societal functions that could be classified into 11 categories, such as those for leisure, sports, housing, cultural activities and so on (von Essen, Jegermalm, and Svedberg 2015). These studies also conclude the level of volunteering in these organizations is stable and engages about half of the population.

In this study, we are interested in voluntary organizations that are classified as socially-oriented. This broad category includes for example parent associations, disability- and patient associations, senior citizen groups, religious organizations, humanitarian groups and organizations providing social welfare. In Sweden, the level of engagement in these types of organizations had increased from 13 percent of the total voluntary engagement in 2009, to 15 percent in 2014. Within this, the proportion of activities aimed at social welfare provision had also increased significantly, from 19 percent in 2009 to 26 percent in 2014 (von Essen, Jegermalm, and Svedberg 2015). It should be stressed, however, that in Sweden the role of the voluntary sector in social welfare provision is actually marginal (Johansson, Arvidson, and Johansson 2015). The well-used expression ‘complement, but not substitution’ illustrates what representatives from Swedish civil society have argued as voluntary organizations’ ideal role in relation to state-funded welfare services (Scaramuzzino and Meeuwisse 2017; SOU 1993,82). Voluntary organizations are not expected to take over any area of welfare and they usually have close cooperation with the public sector. Despite recent high demands on voluntary organizations at a national level, studies at a local level demonstrate that the complementarity is still the ideal (Johansson, Arvidson, and Johansson 2015).

In civil society research, socially-oriented voluntary organizations are further classified into two types, depending on the target group for their activities. ‘We-for-us’ organizations are self-organized groups, while ‘we-for-them’ organizations aim at providing help for others (Lundström and Svedberg 2003; Scaramuzzino and Meeuwisse 2017; Svedberg 2001). ‘We-for-us’ organizations are characterized by unpaid work, typically with a self-help character. Clear examples are patient organizations, caregiver organizations and senior citizens’ groups. Their activities are usually recreational, social, or involve training and education. These organizations reflect voluntary organizations in Sweden that commonly have a non-professional character. Both voluntary organizations themselves and policy makers have characterized their role as that of being a ‘voice’ to represent their members in the public sphere, rather than a body providing ‘service’ to members (Lundström and Svedberg 2003; Lundberg 2017).

On the other hand, ‘we-for-them’ organizations are outward-oriented, where members may be engaged in providing social care and service to disadvantaged groups. Examples could be religious groups providing emergency housing, or groups providing legal and practical help to refugees. This organization type is traditionally associated to Anglo-Saxon and continental European traditions of voluntary social work that arise from charity movements (Lundström and Svedberg 2003). In Sweden, however, these kinds of voluntary organizations are embedded in the formation of the welfare state and often coordinate their efforts with the public sector. As Lundström and Svedberg (2003) emphasize, there has traditionally been a positive pro-State attitude within Swedish voluntary organizations, especially in the areas of education and social welfare.

Methods

Data collection

To study voluntary organizations’ support to older people with SMI in the community, we identified voluntary organizations geared towards mental illness, social care or old age in a mid-sized Swedish city. In other parallel studies, we examine other sources of formal and informal care for older people with SMI in the same local context. For this article, the voluntary organizations that are likely to have contact with older people with SMI were mapped, leading to 11 such organizations. We contacted these organizations by e-mail to present our study and inform about our objectives. Thereafter, we approached the leaders of these organizations to ask if they were willing to participate in the study.

Three of the organizations – two senior citizen groups and one organization providing social care – concluded that they could not provide any relevant information and declined to be included in the study. One organization did not respond to any of the contact attempts. Thus, our final sample consisted of seven voluntary organizations that were represented by leaders, board members or other representatives that were knowledgeable about the organization in question. Figure 1 depicts all approached organizations, their type and focus. As can be observed, our final study sample consisted only of organizations focusing on various aspects of social care and mental health, but not ageing or old age.

Figure 1. The approached organizations according to organization type and focus.

Three researchers (MJ, CJT and MW) interviewed the study participants using a semi-structured interview guide. The interviews lasted from 30 to 90 minutes and were tape-recorded with the participants’ permission. Six interviews took place at the organizations’ offices or activity centers. One interview was conducted as a telephone interview and it was also recorded. The interview guide began with broad questions about the organization, its goal and target groups, and collaboration with other organizations and the local government. We then asked specific questions about older people with SMI as a target group, their awareness of this group’s needs and their inclusion in the organizations’ activities.

Data analysis

Thematic content analysis was used to identify themes in the interviews, which were then used as categories for analysis (Fereday and Muir-Cochraine 2006). Initial coding followed the structure of the interview guide. The three researchers who conducted the interviews first independently summarized their interviews in tables showing the key content, themes and relevant quotations. Thereafter, the whole research team met to discuss the emerging patterns from the interviews. We identified three cross-cutting themes: Age as a non-issue?; Public and voluntary sectors (non)links, and Organizational vulnerabilities.

Ethics approval

The project was granted ethics approval by the Regional Ethical Review Board in Linköping (reference number 2016/7–31).

Results

Age as a non-issue?

The first theme that was immediately striking from the interviews was that older people with SMI were not an easily discernable group for the participants, despite their agreement to participate in a study about this target group. According to all the participants, the reason for not distinguishing older people with SMI was that their organizations welcomed members of all ages. Consequently, they reported that the age of their members was not a significant factor for their work. Some organizations did have youth sections and self-help activities aimed at younger members, but such a distinction was not made for older adults. Although all organizations produced flyers and informational material for potential new members, neither were there any specific actions taken to target older people as a group.

Thus, at first glance, the participants seemed to see high age as a ‘non-issue’, underlining that psychiatric- and social care needs are important at any age. When asked further however, the interviewees not only seemed to be aware of the specific difficulties faced by older people with SMI, but also witnessed the effects of a long life of mental illness among their older members. Some believed that older people with SMI led more difficult lives than the younger generation, due to their history of institutionalization and overmedicalization. As they described, ‘It shows that they [the older members] have been sick’ or, ‘they have been struggling; their lives were very tough’. The participants emphasized how the older generation grew up in times when there was more stigma around mental health issues and many of the syndromes recognized today were poorly understood. They also pointed out that psychiatric and somatic needs intertwine throughout life, with possible effects in later life. As one participant from a ‘we-for-us’ organization noted, there are compounded effects of a long life of mental illness was underlined by one interviewee from a ‘we-for-us’ organization” representing an organization focusing on specific diagnoses:

Often, the older one gets, the more needs one also has. If [psychiatric] help was not provided at the right time, somatic problems arise too. And the longer it takes to get appropriate help, the more prone one becomes to depression and physical ailments. The body can be exposed to additional stress.

One representative, from an ‘we-for-us’ organization with a mental health focus, even suggested that a long life with complex and unmet care needs resulted in premature biological ageing: ‘This group of people don’t get so old. They start breaking down at the ages of 50, 60.’

When asked about the age patterns of their organizations, all interviewees reported that they had active members who were 65 years and older, many of which had been members for many years. For example, ‘a girl group’ in one of the organizations consisted of members from ages 27 to 87 years. Another surprising response that emerged from the interviews was the fact that many of the organizations, specifically the ‘we-for-us’ organizations, were in fact greying. In two of the organizations, the average age of members was about 50 years old. However, the greying of the organization was explained by the interviewees as a general feature of voluntary sector in Sweden, and it was discussed mainly to illustrate challenge of recruitment. The ‘we-for-them’ organizations, being somewhat professionalized in their structure, did not experience this problem. Instead, they had a core group of salaried staff that organized activities and involved as many as around 70 unpaid volunteers.

Public and voluntary sectors (non)links

All the interviewed organizations had frequent communication with local politicians, the staff in psychiatric care, and social workers. The participants emphasized this cooperation with the local authorities as part of their function to act as a ‘voice’, and to lobby for their organization’s cause. For instance, many of the leaders of the organizations were also members of steering committees and advisory groups of the municipality’s Board for disability services. Some of the organizations also received subsidies from the local government to cover costs such as building rent.

Despite frequent communication with local authorities, the representatives of the ‘we-for-us’ organizations expressed frustration that the coordination of services wasn’t working as they expect. Instead, they felt there was a disproportional expectation on their organizations not only to complement publicly-financed care but to also ‘cover holes’ between the public disability- and healthcare services. One participant expressed her frustration, saying:

The municipality seems to think that we have a magic wand and can relieve them of some of the problems on their plate. A non-profit magic wand. But we need support from above, more than we have now. Especially economic support, so we wouldn’t have to increase membership fees just to cover our costs.

The interviewees maintained that the lack of holistic care motivates their continued existence as a ‘we-for-us’ organization. At the same time, they felt that current efforts by public agencies were lacking, leaving voluntary organizations in an untenable situation as substitute providers of social care. As another leader said, ‘people fall between the cracks all the time, and more frequently now. We haven’t been able to fill up the cracks’.

The ‘we-for-them’ organization focusing on social care was the exception, as they did not report feeling burdened as the ‘we-for-us’ organizations did. This organization provided social services according to a contract with the municipality. The contract entails that the organization would provide services such as emergency accommodation, that are municipally funded. In contrast to the other interviews, the tone of this interview reflected partnership with the municipality, rather than substitution. The representative explained that they regularly had meetings with local authorities to discuss how they could solve social problems ‘jointly’.

The ‘we-for-us’ organizations nevertheless also strived to solve problems together, in cooperation with other ‘we-for-us’ groups. In a sense, they thought this was inevitable as they focused on similar issues. However, at least in some organizations, this cooperation was mainly based on personal connections. This made the character of their joint work dependent on specific people, and vulnerable to change or termination. Several interviewees mentioned the failed attempt at establishing an umbrella organization for mental health and illness-focused voluntary groups. The leaders, however, disagreed on their organizations’ positions in the umbrella organization, and the plan soon withered. The only regular inter-organizational activity mentioned by the ‘we-for-us’ organizations was an annual lecture series that they took turns in arranging. This form of cooperation is more outward-focused, rather than building a collective effort to respond to the needs of people with mental illnesses.

Organizational vulnerabilities

Our analysis of the interviews revealed a vulnerability inherent to many voluntary organizations, as their activities are dependent on the individual leaders’ time, passion and interest. In most of the organizations interviewed, the interviewed representatives were the lone driving force behind the organization’s activities. For example, the priest representing the religious ‘we-for-them’ organization explained that his work on mental illness counselling was due to personal interest, and he wasn’t sure if his successor would continue a similar profile.

When work is tied to a few individuals, it is hard to maintain continuity in the organization’s activities. A vivid example of this is a case where the leaders of one of the organizations moved to different cities. As no one volunteered to replace them, the local chapter of the organization closed. But this is not the only problem. As the ‘we-for-us’ organizations were greying, many of the key members were also growing older. In some cases, the representatives that agreed to be interviewed were also the oldest members. In a number of these interviews, the leaders revealed that they often had to work night and day, putting their own mental health at risk. At the time of the interview, two of the interviewed representatives were on long-term sick leave from fatigue syndrome but could not find suitable members to replace them.

The representative of the ‘we-for-them’ social care organization was the only one that expressed optimism about the organization’s future growth. This optimistic view can be partly explained by the organization’s composition of 40 religious communities, which provides a stable base. Their collaboration with local authorities was also well-developed since they provided support to a broader span of marginalized groups, such as homeless people. Their work can be understood within a wider context in Sweden, where authorities are contracting out various kinds of welfare services. This is leading to professionalization among voluntary organizations, especially those that are characterized as ‘we-for-them’ organizations.

Discussion

In the wake of the Swedish psychiatric care- and old age reforms, voluntary organizations could be in a position where they must be in more frequent contact with older people with SMI who lack social networks and need sources of help and support. Because older people with SMI fall in-between psychiatric care and old age care, they are often ‘invisible’ and neglected in social and political discourses. However, our results show that to a smaller extent, this also seemed true in the voluntary sector. Despite knowledge of specific difficulties faced by older people with SMI and awareness of specific members ageing with SMI, older persons with SMI are not recognized as a specific target group, neither by the ‘we-for-us’ or ‘we-for-them’ voluntary organizations.

The relative invisibility of older people with SMI can perhaps be explained by their identity as both ‘old’ and ‘with a mental illness,’ but without being the ‘typical older person’ or ‘the typical person with mental illness’. For example, a plausible reason for why the senior citizen organizations declined to be included in our study may be that disability identities are less discernable in these organizations, where age is the main identifier. By the same token, in the organizations focusing on mental health and illness, the diagnosis is the visible identity, while high age appears irrelevant. Thus, older people with SMI may remain unseen as a group with particular needs.

Another possible reason for failing to identify older people with SMI as a target group for voluntary organizations may also be the inclusive ambition to include ‘all people’ in the organization’s activities. While this may seem as a paradox, the category of ‘all’ may not be so inclusive and may be based on certain characteristics only shared by some. Many activities in the voluntary organizations were designed for persons who were already active members, or those who could actively seek the organizations. Thus, people may not be so aware of the voluntary organizations’ activities or do not have energy, knowledge, or social networks to initiate contact become invisible to voluntary groups. Earlier studies point out that older people with SMI experience more stigma related to their condition and high age, and this acts as a barrier for actively seeking help for themselves (e.g. Muir-Cochrane et al. 2014; Solway et al. 2010). Lack of information and accessibility are also factors that limit access to relevant services by older people with SMI (Muir-Cochrane et al. 2014). Our results point to the need of voluntary organizations to enhance their efforts to identify and approach this group through more focused outreach work, as also suggested in other previous studies (Solway et al. 2010).

Our analysis revealed significant differences between the ‘we-for-us’ and ‘we-for-them’ organizations, regarding how they view their roles and their future outlook. Even though the total number of organizations included in this study is limited, our sample comprehensively represents the ‘we-for-us’ organizations representing mental health issues at the local level. These organizations expressed dissatisfaction with the available care for people with SMI in the municipality through social work services as well as health care services. Accordingly, they see themselves working ‘in spite of’ the welfare state rather than alongside it, in contrast to the ‘complementarity’ ideal of voluntary organizations in Sweden. Two issues can be discussed here. First, the idea of voluntary organizations as complementation is based on the assumption that there are well-functioning public system and structures in place. In case of older persons with mental illness, this does not seem to be the case. This means that either can voluntary organization complement nor substitute if there are no forms of care available. ‘The filling the gaps’ might therefore be more than an empirical description, it might as well serve as a new analytical category that can help us to understand the emerging complexity ingrained in the relationship between the public sector and voluntary organizations under contemporary socio-political conditions. What the consequences of that are and to which extent it is applicable to other care context merits further research. Second, the ‘filling the gap’ function unravels the multiple roles that voluntary organizations take, and these roles go beyond a clear distinction between service and voice. This is in line with research in other areas and contexts. For example, a study of patient organizations in the UK demonstrates that the increasing pressures on voluntary organizations to provide service push those organization into new activities, but also contribute to apparent tensions within those organizations especially in relation to their advocacy role (e.g. Baggott and Jones 2014).

In contrast, the ‘we-for-them’ organizations had a clearer service-provider role where they actively provided social care through contracts with the municipality and paid workers. This semi-professional role may explain why they also regarded themselves as a partner ‘working together with’ the local government. On the other hand, the services provided are broad and cater to different marginalized groups, and thus not limited to services for people with mental illness, with specific needs between psychiatric and social care. The ‘we-for-them’ organization in this study provided what can be portrayed as unpaid social work provided by volunteers as well as social work provided by paid staff. This links to a pattern in the last decade in Sweden where politicians and policy makers increasingly encourage voluntary organizations to provide social services, leading to expectations on voluntary organizations to ‘step in’ and fill gaps as co-providers of welfare services. Perhaps the co-provision of services – whether it be through contractual agreements or through increased activity ‘despite’ the welfare state – marks a shift towards increased responsibility-taking of civil society beyond the dichotomous substitute-or-complement paradigm. Some results from other studies suggest, however, that voluntary organizations in Sweden are not (yet) involved to any larger extent as providers of welfare services (von Essen, Jegermalm, and Svedberg 2015; Jegermalm and Sundström 2017).

Although social welfare volunteering is increasing in Sweden, it seems that issues concerning mental illness do not engage as many volunteers. This is demonstrated through the ‘greying’ of ‘we-for-us’ organizations that have difficulties in finding members in leadership positions. Earlier studies suggest that SMI may still be shrouded in stigma and may be hard to understand, making the situation of older people with SMI less visible compared to other disability categories (Bülow and Svensson 2008). Although ‘we-for-us’ organizations were actually open to everyone interested in mental health issues, it may be the specific appeal to one’s own experiences of mental illness that what prevents broader volunteering from the public. Meanwhile, the ‘we-for-them’ organizations had greater resources for recruiting volunteers, as they provided help to different, but perhaps more visible, neglected groups in society. ‘We-for-them’ organizations, by their nature, provide broad social care, thus also making them more attuned to the prioritized groups set by the welfare state, such as refugees, homeless people and so on. Smaller groups such as older people with SMI are however not as identifiable as a marginalized social group, and older individuals with SMI may overlap with other target groups.

Finally, an insight from this local-level study is that voluntary organizations’ abilities to respond to different group’s needs are shaped by the specific local context. In a study of over 400 local voluntary organizations in Sweden, Lundåsen (2014) argues that the quality of contact with municipal authorities and the responsiveness of local politicians are important factors to local voluntary organizations and these aspects are just as important as the internal, organizational factors. Accordingly, the voluntary sector’s position in supporting the needs of older people with SMI also depends on the priority set by local politicians on these issues. In this study, many of the ‘we-for-us’ organizations did not feel that the municipality supported them, and they struggled to help their members, including older members. The invisibility of people with mental illness in general, and older people with SMI in particular, is thus seen as a problem on a local political level, and where voluntary organizations try to, but do not fully succeed in ‘filling the gaps’.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This work was supported by The Swedish Research Council for Health, Working Life and Welfare under Grant 2015-00223.