Introduction
An estimated 700,000 people with dementia are living in the United Kingdom (Knapp, Prince, Albanese, Banerjee, Dhanasiri, Fernandez et al., Reference Knapp, Commas-Herrera, Somani and Banerjee2007), and it is estimated that globally there are more than 35 million people with dementia (Alzheimer’s Disease International, 2009). Dementia refers to a number of clinical conditions which have differing pathologies, clinical features, and therapeutic potentials. Memory loss, affective symptoms, and an inability to perform activities of daily living are common (Barber, Daley, & O’Brien, Reference Barber, Daley, O’Brien, Keith, Rees and Mander2005; Waite, Harwood, Morton, & Connelly, Reference Waite, Harwood, Morton and Connelly2009; Wimo & Prince, Reference Wimo and Prince2010). Those individuals providing informal support for people with dementia often provide intensive levels of care, and the effects on their psychological well-being may be negative (Alzheimer’s Disease International, 2009; Croog, Burleson, Sudilovsky, & Baume, Reference Croog, Burleson, Sudilovsky and Baume2006).
Welfare policies in the United Kingdom (as well as Europe and North America) have emphasized the importance of individual and family responsibility in the provision of long-term dementia care (Knapp, Commas-Herrera, Somani, & Banerjee, Reference Knapp, Commas-Herrera, Somani and Banerjee2007; Pacolet, Bouten, Lanoye, & Versieck, Reference Pacolet, Bouten, Lanoye and Versieck2000). Individuals have been framed as experts in their own care, resulting from their having been given control over social care funds through self-directed support models (Glendinning, Challis, Fernandez, Jacobs, Jones, Knapp et al., Reference Glendinning, Challis, Fernandez, Jacobs, Jones and Knapp2008; Glendinning, Arksey, Jones, Moran, Netten, & Rabiee, Reference Glendinning, Arksey, Jones, Moran, Netten and Rabiee2009; Rabiee, Moran, & Glendinning, Reference Rabiee, Moran and Glendinning2009). In the United Kingdom, the support service needs of a person with dementia are identified through community care assessments carried out by local-authority social services departments. The services have eligibility criteria, and some individuals may be expected to contribute towards the costs of the statutory support services they receive (Alzheimer’s Society, 2011). More generally in the United Kingdom, the state has reduced involvement in welfare provision because of a quasi-market where health and social service departments purchase services, such as home care, from the voluntary and community sectors (Department of Health, 1990; Lewis, Reference Lewis1993, Reference Lewis1999).
Long-term care provision is the primary responsibility of individuals and their informal caregivers (Gilbert & Powell, Reference Gilbert and Powell2005). In this article, I draw on in-depth qualitative data to examine the complex routes through support taken by informal caregivers for people with dementia in the development of their care networks. I focus on the factors that shape the development of care networks and have identified three routes through support – guided routes, organic routes, and chance routes – and argue that these routes are the outcome not only of the resources that caregivers can draw on but also of varying expectations of the informal caregiver’s role. I demonstrate that the routes taken by caregivers shape, and are shaped by, the composition, scope, and function of their care networks. This article builds on arguments about the role of individual resources in the caregiver experience (Egdell, Bond, Brittain, & Jarvis, Reference Egdell, Bond, Brittain and Jarvis2010) and adds to both the literature on the transformation of support networks of caregivers for people with dementia (Carpentier & Ducharme, Reference Carpentier and Ducharme2005) and to the literature on health service awareness and use (e.g., Forbes, Jansen, Markle-Reid, Hawranik, Morgan, Henderson et al., Reference Forbes, Jansen, Markle-Reid, Hawranik, Morgan and Henderson2008; Hong, Hasche, & Lee, Reference Hong, Hasche and Lee2011; Ploeg, Denton, Tindale, Hutchison, Brazil, Akhtar-Danesh et al., 2009).
Supporting Informal Caregivers for People with Dementia
While policy in the United Kingdom has stressed the central role of informal caregivers in the care of people with dementia, it is also assumed that these informal caregivers will receive support from their networks. However, the support that caregivers receive can be limited because of the uneven social, cultural, and emotional resources available to them (Egdell et al., Reference Egdell, Bond, Brittain and Jarvis2010). Three issues are particularly relevant when examining the support that caregivers receive: the ability of networks to support caregivers; the expectations of the caregiver role held both by the caregivers themselves as well as members of their networks; and the resources that caregivers have at their disposal when identifying their statutory service entitlements. These factors all shape the development of care networks.
Policy assumes that networks are able to support informal caregivers because “individuals are embedded within webs of social relationships … which are said to have the potential to provide support and care” (Fast, Keating, Derksen, & Otfinowski, Reference Fast, Keating, Derksen and Otfinowski2004, p. 6). A support network is distinct from a social network, although the latter provides the foundations on which support can be delivered. Support networks develop into care networks as network members are called upon to provide increasingly more assistance to persons with long-term health needs (Keating, Otfinowski, Wenger, Fast, & Derksen, Reference Keating, Otfinowski, Wenger, Fast and Derksen2003). However, because of differing composition, density, quality of relations, geography, and access to resources, not all networks can provide support (see, for example, Fiori, Antonucci, & Cortina, Reference Fiori, Antonucci and Cortina2006; Keating & Dosman, Reference Keating and Dosman2009; Wenger, Reference Wenger1992, Reference Wenger1997). This fact is illustrated by the findings of a longitudinal study of aging in rural north Wales which identified five different types of support network: (a) local family-dependent; (b) locally integrated; (c) local self-contained; (d) wider community-focused; and (e) private restricted. The different network types influence the everyday lives of older people, including, for example, whom they confide in and what support they receive (Wenger, Reference Wenger1992).
This typology of five different types support networks has been used to identify links between network type and health and social outcomes. For example, Wenger (Reference Wenger1997) showed that in the dementia care situation (absent a spouse caregiver), some networks are able to provide more support than others. Certain network types might not be able to accommodate the needs of the person with dementia: for example local self-contained, local family dependent and private restricted networks might not acknowledge or recognize, and/or may conceal the presence of dementia; and friends in wider community-focused networks might withdraw as the condition progresses (Wenger, Reference Wenger1997). Moreover, others have found that the network’s composition can affect support given to caregivers, with those in close family networks less likely to receive formal support (Keating & Dosman, Reference Keating and Dosman2009).
Expectations of the caregivers’ role and differing interpretations of obligation and responsibility also affect the way in which networks respond to the dementia care situation. Social and cultural attitudes towards the caregiving role can make some caregivers reluctant to ask for their support needs to be met (Bowes & Wilkinson, Reference Bowes and Wilkinson2003; Lawrence, Murray, Samsi, & Banerjee, Reference Lawrence, Murray, Samsi and Banerjee2008). Other caregivers might be resigned to their situation and/or play down the problems that they are facing (Walters, Iliffe, & Orrell, Reference Walters, Iliffe and Orrell2001). It might be assumed that spouses will be able to manage caregiving simply because they are married to the person they are caring for (Oliver, Reference Oliver, Finch and Groves1983), and gender expectations also can affect the support the caregiver receives (Bywaters & Harris, Reference Bywaters and Harris1998). For example, Forbes et al. (Reference Forbes, Jansen, Markle-Reid, Hawranik, Morgan and Henderson2008), using data from the 2003 Canadian Community Health Survey (which covers the majority of the Canadian community-dwelling population aged 12 or older), found a gender difference in home care for people with dementia with caregivers for women (often their husbands) more likely to receive respite services.
Men who were caring for a parent with dementia were less likely to cite physicians as sources of support (Ploeg et al., Reference Ploeg, Denton, Tindale, Hutchison, Brazil and Akhtar-Danesh2009). Adult children might not support their parents if the parents had neglected their past parental duties (Aboderin, Reference Aboderin2004), and older spouse caregivers might not expect their adult children to support them because they think they should prioritize the needs of their own families (Twigg & Atkin, Reference Twigg and Atkin1994). There may be a lack of explicit planning amongst siblings regarding the future care of older parents, and therefore geography or emotional closeness may shape the division of caregiving labor (Connidis & Kemp, Reference Connidis and Kemp2008). As a result of stigma, fear, embarrassment, and assumptions that no help can be provided to the person with dementia, friends might cease to visit, and the person with dementia and their caregiver may become increasingly isolated (Corner & Bond, Reference Corner and Bond2004; Levin, Sinclair, & Gorbach, Reference Levin, Sinclair and Gorbach1989; Neufeld & Kushner, Reference Neufeld and Kushner2009). In addition, a recent study drawing on qualitative interviews with 26 individuals who had provided care in the home to a dying family member identified that caregivers might not seek support in order to maintain the public appearance that they are coping (Funk, Stajduhar, & Cloutier-Fisher, Reference Funk, Stajduhar and Cloutier-Fisher2011).
Holding a formal diagnosis of dementia can be central to the development of the caregiver’s support network. Although holding a formal diagnosis will not necessarily lead to adequate support, a “legitimate” biomedical explanation of the changes that are being experienced allows the person with dementia and his or her caregiver to establish future care preferences and can be used as a tool to negotiate changing social relations (Beard & Fox, Reference Beard and Fox2008; Department of Health, 2009; Derksen, Vernooij-Dassen, Gillissen, Rikkert, & Scheltens, Reference Derksen, Vernooij-Dassen, Gillissen, Rikkert and Scheltens2006). However, dementia is not easy to identify, and diagnosis can only reliably be made post-mortem (Mason, McShane, & Ritchie, Reference Mason, McShane and Ritchie2010). Consequently, diagnoses may only be given to those with pronounced symptoms, and physicians might have to draw lines around what constitutes disease and “normal” forgetfulness (Hughes, Louw, & Sabat, Reference Hughes, Louw, Sabat, Hughes, Louw and Sabat2006). Furthermore, some health care professionals are reluctant to make and/or disclose a diagnosis of dementia because of stigma, ageism, or fear of distressing the patient (Department of Health, 2009; Karnieli-Miller, Werner, Aharon-Peretz, & Eidelman, Reference Karnieli-Miller, Werner, Aharon-Peretz and Eidelman2007). Negative and unhelpful responses when caregivers first seek information can delay them in taking further action (Robinson, Elder, Emden, Lea, Turner, & Vickers, Reference Robinson, Elder, Emden, Lea, Turner and Vickers2009).
Moreover, caregivers might not know how and what formal support to seek. Hong et al. (Reference Hong, Hasche and Lee2011) analyzed data from the 2004 National Long-Term Care Survey and Informal Caregiver Data Set in the United States and identified the most common barriers to service use as lack of awareness and never considering the possibilities of seeking support. Those without access to material resources such as online information might be disadvantaged, and once they found the information, they might not be able to judge the quality of services because they have no marker to make judgments against (Arksey & Glendinning, Reference Arksey and Glendinning2007; Walters et al., Reference Walters, Iliffe and Orrell2001). Even those who have the resources to access information can find the process overwhelming (Robinson, Lea, Hemmings, Vosper, McCann, Weeding et al., Reference Robinson, Lea, Hemmings, Vosper, McCann and Weeding2012); however, those who know where to find support are more likely to mention physicians and home health services as sources of assistance (Ploeg et al., Reference Ploeg, Denton, Tindale, Hutchison, Brazil and Akhtar-Danesh2009).
In view of these findings, in this study I sought to examine the factors that shape experiences of the development of support networks in informal dementia care: the difficulties in diagnosing dementia; the distinctions between social, support, and care networks; caregivers’ access to resources; and the expectations of the caregiver role.
Methods
The Sample
This study drew on data, collected as part of a doctoral study, from 13 caregivers for a person with dementia, living in three socio-economically contrasting neighborhoods of a city in the north east of England. The areas varied in terms of affluence levels, demographic characteristics, public transport links, and shopping facilities. The sample also spanned those living in different caregiving situations, with caregiver recruitment guided by a three-stage caregiver career model (Aneshensel, Pearlin, Mulla, Zarit, & Whitlatch, Reference Aneshensel, Pearlin, Mulla, Zarit and Whitlatch1995, pp. 22–25): stage 1 – caregivers prepare for and acquire the caregiving role; stage 2 – caregivers enact care-related activities; and stage 3 – caregivers disengage from caregiving.
The socio-demographic characteristics of the sample provide a contextual backdrop to the empirical findings which are discussed later. Participants were five males and eight females. The majority of the participants were in their 70s or older; one participant was in her 40s and four were in their 50s. Eight of the participants were caring for or had cared for a spouse. The remaining participants were either caring or had cared for a widowed or divorced parent, and one participant was caring for her sister. Three participants were in stage one of their caregiver careers; six were in the second stage having provided support for between three and 20 years; and four participants were in the final stage. The majority of the participants were retired. None of the participants who were of working age were in paid employment, either because they had been made redundant, because of sickness, or because of their caring role. Three undertook some voluntary work. All of the participants had several members in their support networks: family, statutory support services, and support services provided by the voluntary sector. Note, however, that this list includes all those sources cited by participants, regardless of whether they felt that the support received from the source was adequate or not.
The sample size reflects the difficulty of assembling a group of participants The caregivers needed to be at a stage where they wanted or felt able to talk about their experiences. Additionally, caregiver is a highly political term, often adopted to gain recognition in order to receive state benefits. Many individuals frame the provision of support as an expected part of family life rather than as “caregiving” per se (Henderson, Reference Henderson2001). While I attempted to present the aims of the research in person to potential participants and frame the study in terms of the help provided by family and friends, it is still likely that some potential participants did not recognize the study as relevant to them because they thought they were simply helping a relative or friend rather than providing “caregiving”.
Recruitment
The sample was recruited through 58 voluntary sector organizations, community organizations, and support groups operating in the study areas or at a citywide level. These groups distributed information about the study to service users, displayed advertisements, and some allowed the researcher to visit their premises and present the aims of the study in person to service users. Not all the organizations approached worked directly with caregivers, acknowledging that not all caregivers would seek formal support and could be members of groups separate from their caregiving roles. However, in practice, support groups and organizations with an interest in the needs of caregivers provided the most assistance. The hard-to-access population of caregivers who “go it alone” (Aneshensel et al., Reference Aneshensel, Pearlin, Mulla, Zarit and Whitlatch1995: 363) could not, therefore, be included. Recruitment and data collection were ongoing between May 2007 and November 2008. The decision to cease data collection was made because of a lack of new/effective recruitment avenues and because of the time constraints of the research funding.
Data Collection
The study received National Health Service Research Ethics Committee approval, and written informed consent was obtained from the participating caregivers. Data were collected using interview and diary methods. Semi-structured interviews were conducted with all 13 participants to give insight into care experiences and to get an overview of the participants’ caregiver careers. The interviews lasted between 40 and 100 minutes and were audio recorded with the consent of the participant. Interviews were mainly held in participants’ homes, although three requested that they be interviewed elsewhere. Interview schedules, outlining core questions and topics to be probed further, were used to ensure that key themes (such as background to their caregiving situation and their relationship with members of their support network) were addressed. Participants were encouraged, however, to discuss any issues that they felt were especially relevant to their experiences. There was flexibility in the use of the interview schedule, and questions were revised if they were not applicable to the participants’ caregiving situations.
Data Analysis
The interview and diary data underwent rigorous three-stage thematic analysis with the assistance of QSR International’s NVivo 7 analysis software. The three-stage grounded theory coding process developed by Strauss and Corbin (Reference Strauss and Corbin1990, Reference Strauss and Corbin1998) provided the framework for data analysis to ensure that the analysis approach was inductive. The transcripts were read closely and numerous themes drawn from the data were noted. Connections between the themes were made, and the themes were rationalized to a more abstract level through the identification of three primary themes integral to the data’s “story”. Developing themes were discussed with the team supervising the study.
One of the primary themes was “routes through support”, with three routes through support identified as sub-themes. The three routes through support were identified through mining the data for information about the participants’ networks: who provided regular support; who was turned to in times of crisis; and who was felt to be providing inadequate assistance. Matrices of information were produced to compare sources of support and household composition. This enabled the different processes, or routes, that the caregivers had taken in turning to or drawing upon certain sources of support to be identified. Comparisons were made between the experiences of the different caregivers, and through this, three distinct but interlinked “routes through support” were identified. Note that the complex dynamics around support can mean that help from some sources is underestimated or taken for granted (Carpentier & Ducharme, Reference Carpentier and Ducharme2007). The subjective perception of support adequacy is not simply the objective number of supporters or the amount of support.
Results
When discussing the support they received, the participants referred to the ways in which their care networks had developed. The sources of support varied but fell into two distinct categories: (a) support received from formal services and professionals in the formal sector (including the voluntary sector) whose job it is to assist in long-term care; and (b) informal support received from people known socially by the caregiver (Connidis, Reference Connidis2001: 130). Analysis of the participants’ narratives highlights that the networks developed along three different routes that can be conceptualized as organic, guided, and chance. The routes taken by caregivers shaped the composition, scope, and function of the resulting care networks. The boundaries between the different routes can be blurred, and many caregivers simultaneously followed all three routes in developing different parts of their support network.
Vignettes from six of the 13 participants illustrate the three routes through support and demonstrate that these routes were not only outcomes of the resources that caregivers could draw on but also of varying expectations of the informal caregiver’s role. The names used to refer to the participants are randomly selected pseudonyms.
Organic Routes through Support
What I have termed “organic routes” – the most common in the participants’ experiences of support – evolved over the caregiver career in response to the changing needs of both the caregiver and the person with dementia. These routes, although not always smooth, often characterized the operation of referral systems in health and social care: for example, a general practitioner referral to a memory clinic’s or a district nurse’s suggesting that a caregiver attend a support group because of concerns about the caregiver’s emotional well-being. Family and friends may increase their support in response to the increasing needs of the caregiver or they might connect the caregiver to sources of support such as voluntary organizations. This route is often difficult to identify because it is frequently taken for granted, especially with regards to formal support from health and social care providers, but some caregivers’ narratives (such as those of Mr. O and Mr. P presented next) draw attention to the way in which their informal networks adapted to meet changing needs. Additionally, they illustrate how networks can also expand and that knowledge gained earlier in the caregiver career can be central in this process.
The levels and type of support given to Mr. O, who looked after his wife until her recent death, changed over the course of his caregiver career. Three years earlier, Mrs. O’s behavior started to change. Mr. O did not know what was causing these changes and could not persuade his wife to visit the doctor. Mr. O’s brother, whose own wife had had dementia, suggested that Mrs. O might be suffering from dementia: “He was telling me she’s got dementia … I wouldn’t take any notice, I thought he was kidding …” (Mr. O, interview). Mrs. O’s changing behavior was of increasing concern because she became aggressive, and Mr. O turned to his family for support because he could not cope alone and needed to have his concerns validated: “We knew that something was wrong like then, all of a sudden she’s digging me leg and almost pushing me over the top of the, the arm of the settee” (Mr. O, interview). Once the family agreed that Mrs. O’s behavior was unusual, medical advice was sought and Mrs. O was admitted into hospital, and later into nursing care. Mr. O’s experience was shared by other participants in that they also found it important to have their concerns validated before they sought formal support.
The support that Mr. O received from some of his family, particularly from his brothers, continued. One brother attended meetings with social workers because Mr. O found it difficult when he went alone. The brothers also introduced Mr. O to voluntary organizations that support caregivers because they felt Mr. O needed advice regarding welfare rights. However, in much the same way that the help he received from his brothers increased in the early stages of his caregiver career, it declined as the caregiving situation progressed. Its function also became more defined. One brother’s support was limited by his own ill-health. The other brother only visited Mrs. O once when she was in hospital and in nursing care because these visits brought back memories of caring for his late wife who had had dementia: “Well, he went in once but he wouldn’t go back again because it was bringing memories back, when he had to go in to see his wife” (Mr. O, interview).
In a similar way, other caregivers found that their informal networks fragmented as their support needs changed. They also found, however, that as their caregiver careers progressed, their networks typically started to expand. As an example, Mr. P described how his network shrank and he became increasingly housebound as his wife’s care needs increased. However, he then started to attend a support group run by a voluntary organization, and this group offered a new support and social avenue. Once his wife was in nursing care, this part of his support network developed further, affording him the time to take on a greater role in the community and voluntary sector. Mr. P now helped other caregivers engage with formal support services, drawing not only on skills from the workplace (such as letter writing) but also on those (newly) acquired from the domestic setting. As of the time of the study, Mr. P had, however, kept a “check” on the development of this part of his support network so he still had ample time to visit and continue taking care of his wife (links can be made to the “guided” routes through support discussed next, thereby drawing attention to the blurred boundaries between the different routes).
In sum, the support provided by informal support networks can develop organically as the caregiver’s needs increase. Support networks not only grow, but also shrink and fragment. The route is characterized by an insight into, and recognition of, the caregivers’ needs and communication between network members.
Guided Routes through Support
Based on my research, I developed the idea of “guided routes”. What distinguishes a guided route from an organic route is that in a guided route, caregivers direct the development of their support networks. Caregivers cited examples where they had approached sources of support for assistance when this support had not developed organically in response to their changing needs. Other caregivers mentioned aspects of their experience that they felt they were guiding explicitly, such as the decision that the person they were caring for would be cared for at home and would not enter nursing care. The development of these routes depended on capital, choice, and confidence. Knowledge of the myriad of support services available was essential (as was an understanding of how the needs of the person with dementia change over time). The experiences of Dr. G and Mrs. F, for example, highlight how knowledge acquired through the workplace can be used to guide routes through support. Equally important, knowledge to guide the routes through support could be developed through other, informal caregiving experiences or through pre-existing social relationships.
Dr. G and Mrs. F, who cared for their husbands, were both able to guide their routes through support. Through their knowledge of the progressive nature of dementia, they were able to anticipate the challenges they would face. Dr. G, a retired health care professional in her early 90s, was aware of the problems her husband would face when he entered the later stages of dementia. Dr. G cared for her husband at home for six years and arranged for adaptations to be made to their home before they were needed: “I realized that he was going to have difficulty with the stairs very shortly … So I didn’t wait to go through the proper channels, I arranged for the stair lift which you see …” (Dr. G, interview). Dr. G also guided the changes in the function of her existing support networks. For example, a housekeeper, employed prior to her husband’s diagnosis, started to sit with him during the afternoons so that Dr. G could run errands and go shopping. Although the couple had one adult son, Dr. G noted that she did not draw too much on his support, especially with the provision of intimate care: “He [adult son] might have felt a bit sort of – awkward – helping his father” (Dr. G, interview).
Despite indicating that she was satisfied with the support that she received and that she had coped well with caregiving, Dr. G stated that some network members had low expectations of her capabilities because of her age: “And it was really funny because, the physician who was looking after him, I don’t think had very much experience with elderly people … because he didn’t think at 90 that I would be able to look after [husband]” (Dr. G, interview).
The experiences of Mrs. F, who also previously worked in health care, highlight the fact that in other instances, medical professionals can have higher expectations of the capabilities of the caregiver and also acknowledge their insights. Mrs. F, who supported her husband who was in the very early stages of dementia, explained that she had built a good relationship with her husband’s doctor and that her medical expertise was always acknowledged:
I… know when he’s coming down with…different things I’ll ring the doctor and I’ll say, [husband’s] not right … and I mean the doctors know us, and they know that when I get in contact with them and they know they’ll always take us serious (Mrs. F, interview).
Like Dr. G, Mrs. F had also been able to make plans regarding the physical care of her husband:
[Husband] will not go into a nursing home, he will be cared for at home, and obviously I’ve got me daughter to help … and I’ve got me son-in-law …We didn’t used to get along very well, me son-in-law and me; we’ve had words … And I’ve tried to explain the situation … (Mrs. F, interview).
Mrs. F and her husband had decided that he should remain at home. Mrs. F knew how physically demanding this would be and guided the development of her support network to facilitate this by settling a feud with her son-in-law so that she could draw on his support as her husband’s condition deteriorated. His physical strength is especially vital if Mrs. F is to continue to care for her husband at home.
In sum, guided routes are shaped by the caregiver’s capital, choices, and confidence. They are distinct from organic routes in that the caregiver is responsible for directing the development of the support networks. For example, caregivers may have insight into their future support needs and therefore ensure that networks have the appropriate capacity and function to assist them in the future.
Chance Routes through Support
What I have called chance routes hinge on face-to-face encounters with knowledgeable individuals and crisis points, usually the culmination of long periods of stress. The support that the caregiver receives has not developed organically, and some caregivers later felt that they might have never known about or received certain sources of support, such as financial benefits, had it not been for these encounters or crisis points. Although the least common of the three routes, chance routes are characterized by (a) a lack of understanding of the caregivers’ needs, (b) assumptions that caregivers can cope alone and will seek support themselves if needed, (c) the disjointed nature of referral systems, and (d) poor communication between the formal and voluntary sectors.
The example of Mr. E also highlights that caregivers can be unaware of the support services available to them, and this unawareness may be a key barrier to service use. Mr. E, who supported his wife, observed that when she was first diagnosed with dementia, he was reassured by the hospital staff that he would be supported. However, he stated that for the first few years he received no assistance. Mr. E described the crisis moment which highlighted the couple’s vulnerability and spurred him to request support from the health and social care system:
I was bathing her, it’s about after three years ... when I lifted her up she slipped out of me hands … and I said to myself, oh I could have killed her ... and she couldn’t talk to us, she couldn’t answer us then. And I rang me doctor up. And I asked if he could come up and see us … And he rang us up the next morning and he says … can you tell us if there’s anything else wrong with her like measles? And he says well we know she’s got Alzheimer’s, it’s not worth coming to see, you know, not really. Then I saw red. (Mr. E, interview)
Other participants had similar experiences. One adult son caregiver described how his mother’s memory problems were only investigated following a hospital admission for a different medical problem.
The development of Mr. E’s voluntary sector support network also followed a chance route. In his case, the support that Mr. E received from the voluntary sector was the result of a chance meeting in the entrance of the hospital where his wife was being treated. Mr. E was previously unaware of the services provided by the voluntary sector, so seeking support from them was not a possibility at the time. Similarly, another husband caregiver only found out that he could receive contributions from the state towards the costs of his wife’s care when a neighbor read a magazine article about the funding of long-term care. In yet another case, an adult daughter caring for her father said that she did not know she could ask for help and that she felt that many other caregivers thought that they, too, should cope alone. Informal discussions with workers in the voluntary sector highlighted how referral to their services, such as caregiver support groups, often hinged on these chance routes.
Discussion
This study has found that caregivers follow different routes in the development of their support networks as a result of the different resources they can access and the expectations of their role. The routes taken by caregivers shape the composition and scope of their care networks. Several key issues shape which of the three routes a caregiver is likely to follow.
The caregiver career is shaped by a series of “passports” that are central in the development of the organic routes through support. Mr. O’s vignette highlighted the importance of support network members’ acknowledging the caregivers’ concerns in order that routes develop organically; such acknowledgment also enables caregivers to feel able to seek formal support (Carpentier, Ducharme, Kergoat, & Bergman, Reference Carpentier, Ducharme, Kergoat and Bergman2008). This can be difficult. It has been found elsewhere that a person’s receiving a diagnosis was particularly important because it gave caregivers “permission” to ask for support and make difficult care decisions (Aneshensel et al., Reference Aneshensel, Pearlin, Mulla, Zarit and Whitlatch1995; Beard & Fox, Reference Beard and Fox2008; Department of Health, 2009; Derksen et al., Reference Derksen, Vernooij-Dassen, Gillissen, Rikkert and Scheltens2006). Caregivers might only feel able to seek support, and it might only be proffered, once requests are validated. Consequently, diagnosis marks an important new phase in the caregiver career.
Social capital can affect network composition (Keating & Dosman, Reference Keating and Dosman2009), and the development of guided routes depends on capital, choice, and confidence, as mentioned. Inasmuch as finding information about support service entitlements is time-consuming, caregivers may need the material and emotional resources to start this process and guide their routes through support (Arksey & Glendinning, Reference Arksey and Glendinning2007; Walters et al., Reference Walters, Iliffe and Orrell2001). The caregiving situation is also often very new, and because of the silence and stigma that surrounds dementia, caregivers might be unaware of both the course of the disease and of what support is available. Knowledge of the myriad support services available is essential (as is an understanding of how the needs of the person with dementia will change over time). Without this insight, caregivers cannot make informed care decisions nor have the confidence to seek support (Arksey & Glendinning, Reference Arksey and Glendinning2007; Hong et al., Reference Hong, Hasche and Lee2011; Walters et al., Reference Walters, Iliffe and Orrell2001).
Of the study participants, Mrs. F and Dr. G were able to guide their routes because of medical knowledge and previous life experiences. It could be argued that any gender differences in support-seeking behavior (Ploeg et al., Reference Ploeg, Denton, Tindale, Hutchison, Brazil and Akhtar-Danesh2009) could in part be the result of variable previous life experiences. While it must be acknowledged that male participants guided some of their routes through support, it could also be suggested that men might be less likely to be in the active guided route because traditional “husband” roles might not offer the same opportunities as “wife” roles offer women to develop active relationships with health professionals through previous caregiving experiences, such as looking after children.
The extent to which caregivers are able to guide their routes may also rest on the caregiving-role expectations of health and social care professionals. Mrs. F had a good relationship with her husband’s general practitioner, who always acknowledged her medical expertise. However, individual health care professionals can have different interpretations of caregiver capabilities shaped by expectations, in the case of Dr. G, about age as well as gender (Bywaters & Harris, Reference Bywaters and Harris1998), which could hamper the caregivers’ ability to effectively guide their routes through support.
As mentioned, chance routes hinge on crisis points. It can be argued that this hinging is shaped by expectations that caregivers can cope alone and will seek support themselves if needed. Mr. E, for example, found that the statutory element of his care network did not develop organically. Arguably, feelings of being unsupported can be heightened by expectations of spouse caregivers that the caregiver role should fall only to them and not to their adult children (Twigg & Atkin, Reference Twigg and Atkin1994). The statutory element of Mr. E’s care network developed only after a crisis that spurred him to seek support. Many might only seek support following a crisis point because of a lack of knowledge or lack of support from their support network (Boise, Morgan, Kaye, & Camicioli, Reference Boise, Morgan, Kaye and Camicioli1999). The examples of Mr. E and of the adult daughter caring for her father illustrate that caregivers may be unaware that they can ask for support and that organizations are available to support caregivers (Hong et al., Reference Hong, Hasche and Lee2011). Caregivers can experience “the classically circular difficulty of not knowing what it was that they did not know until they had found it out” (Twigg & Atkin Reference Twigg and Atkin1994, p. 47). As such, crisis points also act as passports to support in contexts where caregivers do not know that they can ask for support. Mr. E’s narrative indicates that they can accentuate the vulnerability of both the caregiver and the person with dementia and give the caregiver the confidence to ask for support. However, some caregivers may not seek support in order to put up a good front with respect to their coping abilities (Funk et al., Reference Funk, Stajduhar and Cloutier-Fisher2011).
Chance routes also draw attention to the gatekeeper role taken by health and social care professionals to support networks by influencing access (Rummery & Glendinning, Reference Rummery and Glendinning1999). The example of Mr. E draws attention to the assumptions that little can be done to assist people with dementia, and therefore care for the person with dementia (and often, by default, their informal caregiver) may not be forthcoming. The case of Mr. E also illustrates that receiving support might rest on chance meetings with individuals and thus can be shaped simply by such factors as on which day the person with dementia has a hospital appointment. Thus, service provision can be shaped by a number of factors: (a) the professional values of front-line workers, (b) the shared culture of the teams with which individuals work, (c) the social values workers bring to their role, (d) a lack of resources, and (e) an underestimation of the pressures experienced by the caregiver (Lipsky, Reference Lipsky1980; Rummery & Glendinning, Reference Rummery and Glendinning1999; Twigg & Atkin, Reference Twigg and Atkin1994).
The identification of the three routes through support has policy implications in that it draws attention to the role of caregiver service awareness in the development of networks. Frequently, the caregiving situation is new to a person, and because of the silence and stigma that surrounds dementia, caregivers might lack knowledge and resources. Therefore, for those caregivers who are not aware of their service entitlements, health and social care professionals play a key role in influencing the routes that caregivers ultimately take. This has implications for practice because it draws attention to the situation in which caregiving policy implementations at a local level are shaped by individuals. Thus, the support needs of caregivers might not always be acknowledged and referral to support services can rest on chance encounters with those who recognize the caregiver’s needs and know about the existence of support groups. Therefore, recommendations can be made for increasing the awareness of health and social care professionals of caregiver need and improving communication between various teams looking after one individual, as well as ensuring that caregivers are provided with standard information about sources of support.
Limitations
This study has some limitations. First, the hard-to-access population of caregivers who “go it alone” was not included in the sample because recruitment was focused on support groups, although the study was also publicized through channels that were not necessarily associated with caregiver support. Therefore, while the sample might not be representative, the data do provide a rich, nuanced understanding of the caregiver experience. A second limitation is that other “routes” possibly exist, although they were not found in this study.
Conclusions
In conclusion, this article has demonstrated, using in-depth qualitative data, that the routes through support followed by caregivers for people with dementia depend not only on the social, cultural, financial, and emotional resources that the informal caregiver can draw on (Egdell et al., Reference Egdell, Bond, Brittain and Jarvis2010) but also on the gatekeeper role of health and social care professionals and expectations of a caregiver’s capabilities. Although attention has been drawn to the role of gender in shaping the caregiver’s experience, it must be recognized that a range of other intersecting factors such as age, stigma, culture, social class, and personality also play an important role. The article provides insights to formal care providers about the reasons for service use and non-use, and it adds to the literature in offering insight into network transformation and health service awareness. The identification of the three routes through support also provides a valuable potential framework for examining the experiences of caregivers for individuals with other long-term health conditions.
