Can we move beyond burden and burnout to support the health and wellness of family caregivers to persons with dementia? Evidence from British Columbia, Canada
Meredith B. Lilly
CRL Building – Suite 282
1280 Main Street West
ON L8S 4K1, Canada
After more than a decade of concerted effort by policy-makers in Canada and elsewhere to encourage older adults to age at home, there is recognition that the ageing-in-place movement has had unintended negative consequences for family members who care for seniors. This paper outlines findings of a qualitative descriptive study to investigate the health and wellness and support needs of family caregivers to persons with dementia in the Canadian policy environment. Focus groups were conducted in 2010 with 23 caregivers and the health professionals who support them in three communities in the Southern Interior of British Columbia. Thematic analysis guided by the constant comparison technique revealed two overarching themes: (1) forgotten: abandoned to care alone and indefinitely captures the perceived consequences of caregivers’ failed efforts to receive recognition and adequate services to support their care-giving and (2) unrealistic expectations for caregiver self-care relates to the burden of expectations for caregivers to look after themselves. Although understanding about the concepts of caregiver burden and burnout is now quite developed, the broader sociopolitical context giving rise to these negative consequences for caregivers to individuals with dementia has not improved. If anything, the Canadian homecare policy environment has placed caregivers in more desperate circumstances. A fundamental re-orientation towards caregivers and caregiver supports is necessary, beginning with viewing caregivers as a critical health human resource in a system that depends on their contributions in order to function. This re-orientation can create a space for providing caregivers with preventive supports, rather than resorting to costly patient care for caregivers who have reached the point of burnout and care recipients who have been institutionalised.
What is known about this topic
- • As a result of concerns about population ageing on health system resources, policy-makers encourage ageing at home strategies.
- • Family caregivers to individuals with dementia experience negative health consequences because of their caring work. Caregiver respite and support programmes can help alleviate caregiver burden.
What this paper adds
- • New expectations upon caregivers to engage in self-care without adequate support serve to amplify caregivers’ experiences of burden.
- • The Canadian homecare policy context prevents caregivers from successfully addressing their health and wellness needs by embedding incentives to declare burnout as their only means of receiving assistance.
- • An occupational health and safety approach that recognises caregivers as a critical health human resource could help avoid such negative consequences.
After more than a decade of concerted effort by policy-makers to encourage citizens to age at home, there is a growing recognition that the ageing-in-place movement has had unintended negative consequences for the family members who care for seniors. These include worse personal health, injury, depression, anxiety, fatigue, financial problems and employment losses (Braun et al. 2009, Carstairs & Keon 2009, Pinquart & Sorenson 2003, Sims-Gould & Martin-Matthews 2010). Caregivers to individuals with dementia are widely recognised as being the most vulnerable to these experiences and in greatest need of support (Brodaty et al. 2003, Pinquart & Sorenson 2003, Nelis et al. 2008, Carstairs & Keon 2009, Braun et al. 2009, Canadian Institute for Health Information 2010). Relative to other caregivers, those caring for individuals with dementia are also more vulnerable to social isolation (Nelis et al. 2008) and psychological distress (Pinquart & Sorensen 2004) resulting from the heavy demands of care-giving and difficult behaviours of care recipients.
In the past, discussions surrounding supports for family caregivers (hereafter simply referred to as caregivers) have focused primarily on preventing caregiver ‘burnout’, when caregivers are physically, mentally and emotionally depleted from caring for another person (Almberg et al. 1997, Pinquart & Sorensen 2004). This is the point at which caregivers are often no longer able to continue in their caring roles and care recipients are at greatest risk of institutionalization (Brodaty et al. 2003, Canadian Institute for Health Information 2010). Recently, the research literature has moved away from describing caregiver burden and burnout. Although the reasons for this are unknown, there appears to be a growing sense that the problems associated with care-giving are sufficiently well understood to start addressing them, as well as a desire to recognise the positive aspects of care-giving (Armstrong & Kits 2001, Brodaty et al. 2003, Nelis et al. 2008). Researchers and practitioners in the field are currently implementing practices to better support caregivers, and many of these initiatives are being evaluated (Keefe et al. 2007, Keefe & Rajnovich 2007, Nelis et al. 2008, Giesbrecht et al. 2010).
Care-giving and the policy context
Despite the above-mentioned initiatives, there has been a general lack of attention to the broader impact of health policy in shaping the caregiver experience. Historically, family care-giving has been regarded as a private responsibility in Canada, not an area for public policy development (Armstrong & Kits 2001). What few services and supports caregivers had in the 1980s and 1990s were severely curtailed when the First Ministers’ 2003 Accord on Health Care Renewal (Health Council of Canada 2005) shifted government spending to short-term acute home care and end of life services by decreasing investments in long-term care for individuals living with chronic health conditions, such as Alzheimer’s disease. This lack of attention to caregiver support has now become entrenched through implementation of such tools as the Residential Assessment Instrument – Home Care (RAI-HC), which is focused entirely on the needs of care recipients and which will be discussed later in the paper.
At the same time, serious concerns have been raised about a future shortage of family caregivers. These stem in part from women’s increased labour force participation, the ageing demographic, smaller families that are more geographically dispersed and the longer duration and increasing complexity of unpaid care-giving work (Armstrong & Kits 2001, Lilly et al. 2007). This potential shortfall of caregivers, combined with the cutbacks to homecare services in the 2000s, has placed the role of government in supporting caregivers under scrutiny at both the provincial and federal levels. Since the 2003 Accord, the Canadian Senate has called for the development of a national caregiver strategy (Carstairs & Keon 2009), and some provinces have begun to lay this groundwork (Ontario Ministry of Health and Long-Term Care 2009, Alberta Caregivers Association 2010). Canada’s interest in developing caregiver support policies mirrors international progress. For instance, Australia recently passed a National Carers Recognition Bill (Australian Government 2009), and the United Kingdom (UK) is in the process of revising and improving its national caregiver support strategy (HM Government 2010).
In order for new practices and initiatives to be successfully implemented, an examination of the ways in which current health policies coincide with, or diverge from, caregivers’ stated support needs is important. The purpose of this paper is to outline the findings of a qualitative study (1) to investigate the health and wellness support needs and resources of family caregivers to persons with dementia and how health policy decisions and practices play out in influencing these needs and resources and (2) to apply these findings to a critical discussion of the current health policy and practice environments to identify strategies for enhancing support for caregivers in ways that move beyond the foci on burden and burnout. The Interior Region of British Columbia (BC) offers an interesting case study for research because, at the time of data collection, the province had begun to recognise and develop policies and programmes to better support caregivers. We believe that our results have relevance for other Canadian provinces now developing their own support programmes, as well as other countries.
We conducted a qualitative descriptive study (Sandelowski 2000) drawing on focus group methodology to provide a comprehensive understanding of caregiver experiences. The qualitative descriptive approach is based on tenets of naturalistic inquiry (Lincoln & Guba 1985) and aims to provide detailed summaries of events in the ‘everyday terms of these events’. Although descriptive qualitative studies are less theoretical than other qualitative approaches, they are particularly suitable for research studies geared towards policy-making. We used focus group methods for two reasons. First, focus groups are a successful method for accessing a wide range of views (Sandelowski 2000). In this study, capturing the views and multiple perspectives of professional, volunteer and family caregiver participants – combined with their overlapping status as previous or current caregivers, of different ages, genders and socioeconomic backgrounds – served to provide a rich context for generating new ideas. More importantly, the research team recognised the extreme lack of free time many current caregivers have in their daily lives to engage in any leisure pursuits, let alone research. It was important to accommodate their participation in as convenient a manner as possible. Individual interviews at caregivers’ homes were inappropriate as caregivers often co-resided with their care recipients with dementia who may have become agitated by the presence of a stranger. The best method to encourage caregivers to participate, while meeting our additional goal of gathering diverse perspectives, was to conduct focus groups in conjunction with existing caregiver support groups in which many current caregivers already actively participate. Through the co-operation of the Alzheimer’s Society of BC, we were able to conduct focus groups in conjunction with all active caregiver support groups in the region.
Three types of individuals were considered appropriate for recruitment via convenience sampling: individuals who self-identified as providing unpaid care to a family member or friend with dementia at home (Nelis et al. 2008), individuals who provided voluntary peer support to such caregivers, and individuals who provided support to such caregivers as a part of their professional roles. Potential participants were recruited via three methods. Study information posters were disseminated to healthcare professionals employed at the local health authority and who worked with family caregivers and to participants in the Alzheimer Society of BC’s caregiver support groups. In addition, some snowball sampling occurred whereby the above-mentioned individuals notified others in their personal and professional networks about the study. Third, the study was promoted by the Institute for Healthy Living and Chronic Disease Prevention at the University of British Columbia, and interested individuals were given a study contact email address.
Focus groups were conducted between May and October 2010 in three communities in the Southern Interior of British Columbia (BC). Groups were facilitated by an experienced qualitative researcher (CR) using an approved interview guide comprising of open-ended questions; a second researcher took detailed notes. Questions focused on challenges to caregiver health and well-being, services available for caregivers, facilitators and barriers to accessing such services, and new ideas to encourage caregiver health and well-being. The focus groups were audio-recorded, and data included the audio-recordings, detailed notes and demographic questionnaires. Data analysis was guided by the constant comparison method (Corbin & Strauss 2008) and involved repeated readings of notes and listening to the recordings by two of the investigators (CR and ML). In keeping with the descriptive qualitative approach, we summarised the informational contents of the data. Data related to similar topics were grouped, and themes to describe topic groupings were determined by consensus and were supported by verbatim excerpts as well as review by other team members.
Ethical approval was received from the Behavioural Research Ethics Boards of both the University of British Columbia and the Interior Health Authority of BC. Study information and consent forms were distributed to potential participants 1 week in advance of the focus groups. Before commencing the focus groups, research team leads (CR and ML) reviewed the information with participants, informed them of their rights as study participants and received informed written consent.
Focus group characteristics
A total of 23 individuals participated in three focus groups, with an average of eight participants per group. As expected, the sample was overwhelmingly comprised of women (n = 20) and seniors (median age = 66). Although the majority (61%) were retired, only one preretirement aged participant was out of the labour force. Most (n = 15) lived in small urban areas with populations ranging between 50 000 and 100 000; six lived in towns with populations of approximately 10 000; and two lived in rural areas (populations under 1000). Nineteen of the 23 participants were, or had previously been, family caregivers to individuals with dementia. Four of the 23 participants were peer support volunteers, and four were healthcare professionals (primarily social workers) who support caregivers in their roles.
The 19 individuals who had been caregivers also included four peer support volunteers and healthcare professionals. This enabled them to bring multiple perspectives about the care-giving experience to enrich the discussion. Table 1 outlines in more detail the care-giving characteristics of volunteer/health professional participants versus those who were solely family caregivers.
Table 1. Characteristics of family caregivers
|More than one care recipient||6||31.6||5||1|
|Relationship to care recipient|
| Other relative||2||10.5||2||0|
|Median duration of care (years)||6|| ||5||11|
|Median weekly hours of care||168|| ||120||168|
|Care receiver assisted by others||14||73.7||10||4|
| Voluntary organizations||3||15.8||2||1|
| Health system||10||52.6||7||3|
| Multiple sources||5||26.3||3||2|
|Caregiver assisted by others||8||42.1||6||2|
| Voluntary organizations||4||21.1||3||1|
| Health system||2||10.5||2||0|
The results of our analyses revealed two thematic areas: (1) forgotten: abandoned to care, alone and indefinitely and (2) unrealistic expectations for caregiver self-care. We outline each in detail later. It is important to point out that no notable differences were found in the issues raised/discussed by caregivers versus healthcare professionals.
Forgotten: abandoned to care, alone and indefinitely
Despite their deep commitment to their care-giving roles, many participants were disappointed about the degree to which they felt that this commitment was taken for granted at all levels, by healthcare providers and health system representatives, by other family members, as well as care recipients themselves. They frequently cited examples of the ways in which they both passively and actively received messages that either the system was too overburdened to help them or that they were unlikely to receive help because of inflexible rationing approaches adopted by the healthcare system:
If I were to call the [case worker], sometimes it would take quite a few days before they would get back to me because they are so overworked.
Nobody ever calls me back to tell me that everything’s fine, or that they’ve done this or that... no one ever calls me back to communicate what has happened. There’s never any follow up on anything unless I make a point of going and talking to someone. I find that very difficult.
This had the effect of positioning caregivers as forgotten and alone in meeting the demands of care-giving and in many cases fighting for recognition of not only their care-giving work but also their own needs for support:
It needs to come from us. The help doesn’t come to you. You have to fight for yourself, you have to. It doesn’t come to you and it doesn’t come easily either.... You have to grab it and ask for it. I went into it blind.... It takes a lot of perseverance on the caregiver’s part to get where you need to go, and see who you need to see.
As long as family members will keep looking after the person, [the health care system] will allow it to keep happening. It doesn’t matter what is going on. As long as you keep doing it, they will let you.
Caregivers’ expressions of frustration were focused on the desire to receive more supports from the formal home and community care system, primarily in four areas: (1) information and referral; (2) in-home services for their care recipient; (3) respite services for themselves; and (4) assistance with the transition into long-term care.
Information and referral
The need for consistent, reliable and current information about dementia and health services available to both care recipients and caregivers was mentioned by many caregivers. Participants found it particularly challenging to gather information and access supportive services early in the disease trajectory. Overall, personal interactions with non-profit staff and caregiver support groups were viewed to be the most beneficial sources of information and support:
I appreciate the [non-profit organization] has a dementia hotline, but I’ve never used that because I want to relate to somebody that I know, that will be aware of me and my needs....Maybe the new generation of young people will come and they’re quite comfortable using the Internet and other hotlines and that kind of thing, but I think really there has to be a personal network as well to help people find the resources in their own settings.
When caregivers were asked specifically about their use of the Internet as a source of support, they provided mixed responses. There was an obvious inverse relationship between caregiver age and use of the Internet. Several younger caregivers found the Internet to be an important early source of information on Alzheimer’s disease and related dementias, while many older individuals did not use the Internet at all to access information or supports. Some were resistant to the idea of using the Internet altogether and were critical of suggestions to simply access information sources that may already be available to them, citing lack of free time to engage in this sort of activity.
Adequate and appropriate in-home services provision for their care recipient
The provision of formal healthcare services to care recipients with dementia has direct impacts on the health and well-being of caregivers. With respect to individuals with dementia, caregivers discussed their difficulties accessing appropriate services as a result of care recipients’ behaviours and/or unique disease-related needs:
[The adult day programme] is not a secure programme. He [care recipient] went once. After lunch he went and sat on a bench outside. He didn’t want to come back into the building, so they had to send someone to go sit with him until I showed up to pick him up, so they turfed him.
Constant staff turnover was another frequently cited problem in accessing appropriate services for care recipients with dementia. Some participants found these staffing changes so stressful for themselves and their care recipients that they opted to purchase reliable and consistent private care, rather than rely on uncertain services from the public system. Not all families had the financial flexibility to purchase private care, and they expressed frustration about the staffing problems:
Mom got used to one girl coming. Then they decided they were going to start switching them around. You never knew who you were going to get and who was going to be at the door. Once they’re familiar with someone, it really seems heartless almost to me to be sending someone new that knows nothing about them.
Not only are they overworked, but they get moved around all the time, and you can’t get to know anyone.
Finally, some caregivers indicated that their requests for adult day care services were discouraged or refused by case managers if their care recipient appeared to be too high functioning or too young relative to other programme participants.
Respite and relief services for caregivers
The most requested support need expressed by caregivers was for respite from the responsibilities of care-giving. Several cited the total lack of availability for respite care, especially for individuals living in rural communities. Many were unaware that any respite services were available, while others were denied services when they tried to access them (e.g. because their family member was deemed an elopement risk) despite their best efforts to ‘work the system’. Furthermore, the sense that caregivers needed to both qualify for and justify to case managers this need for relief was difficult for some:
Caregivers need to get thick skin. You need to get yourself squared up….[so] that you don’t take it all personally... You’re not being mean. You need a break.
Those who had received respite services from the home and community care system expressed concerns surrounding the inflexibility of service provision. Several caregivers indicated that programmes were designed in such a way that they were unable to benefit fully. For instance, one caregiver found that the respite time provided was insufficient to allow her to leave the house, so she would often just go into another room to be alone. This was a serious problem for those living in rural areas. Healthcare workers participating in the focus groups were aware of the inflexible structure of publicly funded respite programmes suggesting that they made clients ‘fit into’ what was offered rather than adapting services to clients’ needs.
Financial concerns related to costs to access respite and relief programmes were also raised. For instance, in one community, the only local adult day programme operated as a government subsidised programme several days each week (at a cost to participants of $7.50 [Cdn] per visit) and a private for-profit programme (at a cost to participants of $78.00 [Cdn] per visit) other days of the week. As most participants were retired and reliant on fixed incomes, it was not surprising that the majority opted to attend only on subsidised days, citing the prohibitively high cost to participate on other days.
Assistance with care recipients’ transitions into long-term care
None of the caregivers in our focus groups were pleased about the decision to transfer care recipients to long-term care settings. Those who shared stories of placement described scenarios typical of caregiver burnout: care recipients had reached a level of constant high dependency to which caregivers could no longer respond. These caregivers described experiencing resistance and long delays from case managers and others in the healthcare system when they asked for help with this transition. Many shared remarkably similar stories of feeling forced to present health system managers with ultimatums before they could extract any supports:
‘It’s her or me: pick one of us to put in somewhere’....She was placed very shortly. She was still high, 23 or 24, on the Mini Mental [state examination]... So, she was still fairly high functioning. It was just the twenty-four/seven. I had reached the end of my tether. It was her or me. [Note: the mini–mental state examination (MMSE) is a brief instrument commonly used to help diagnose dementia.]
I just had to say ‘She either goes into care or you’re going to look after her someway, because I can’t’.
I had to go to the breaking point and say ‘I can’t do this anymore’ before I was able to get the attention [from the health care system] to get him placed in an appropriate time frame.
Unrealistic expectations for caregiver self-care
The second theme related to responsibilities for caregiver self-care. As mentioned in the Introduction, the body of research on caregivers from the 1990s documented the degree to which caregivers themselves suffered physically, mentally and emotionally as a result of their care-giving roles. Focus group results suggest that one of the unintended consequences of drawing attention to caregivers’ poor health appears to be, from the perspective of some participants, that self-care is now an added responsibility. Most expressed that self-care was important, not for their own well-being, but so that they could continue to care for their family members:
Look after yourself so that you are still able to look after your loved ones.... If you aren’t able to deal with your own life and the way that life is going, it’s hard to look after someone.
You have to watch for signs of stress, so that you can understand that you are in a stressful situation because in some cases, you can keep going and not sort of get yourself diagnosed... that you are overburdening your system.
Other participants expressed poignant frustration with this self-care expectation, particularly in the absence of any forms of assistance to do so:
I was at a meeting with Mental Health not long ago where there was an integrated health nurse and a community nurse [and I asked], ‘How can caregivers take care of themselves, when there is nothing for you and you don’t have family and friends.’ But the way they explained it at that meeting was ‘[the health system] is this box. And until you get to the threshold of the box, you have to rely on family or friends.’ I said, ‘what if you don’t have family and all your friends are in the same boat?’ There is nobody to help you. ‘Well, you’re on your own. We are only responsible for this box. Because [your husband] dressed himself, you don’t qualify for the box.’ I found out later that wasn’t true. Tell me, how can you take care of yourself when you don’t qualify for anything?
The themes evident in our focus group data were strong and consistent: caregivers are struggling to receive recognition and adequate services, and they now feel additionally burdened by expectations to look after themselves. Participants’ experiences of the problems associated with the delivery of high-quality, flexible respite services and concerns about high staff turnover in the sector have previously been documented (Wiles 2003, Dunbrack 2007, Yantzi et al. 2007, Lilly 2008). Most recently, Sims-Gould & Martin-Matthews (2010) analysis of the BC homecare sector emphasised the difficulty that staffing issues present for caregivers to individuals with dementia specifically. What is significant about the present findings is the degree to which very little seems to have changed for family caregivers since the literature on caregiver burden first surfaced. Our findings underscore the challenges and frustrations that caregivers continue to experience when they are offered only rigid respite programming aligned with health system goals and needs, rather than caregivers’ articulated needs (Power 2008). Furthermore, these findings indicate that new expectations for caregivers to care for themselves in the context of limited support have not been effective (or realistic) and may be adding to the burden that caregivers are already shouldering.
In addition, we note that the vast majority of new ideas to support caregivers presented in the focus groups were direct responses to the enormous levels of burden and burnout that were still being experienced. Several possibilities emerge for why this may have occurred in our research. One possibility relates to methodological limitations of this study. It is possible that other views may have been collected with a larger, more diverse, sample. For example, although the number of men in our study was representative of the proportion of men who adopt primary caregiver roles in Canada (Lilly et al. 2010), the inclusion of more men might have provided more helpful insight into the specific challenges they face as caregivers (Fergus & Gray 2009). Nevertheless, the focus groups in this study were consistent in the types of issues raised and reflect the findings of others. For instance, the provinces of Alberta and Ontario have recently conducted wide-scale caregiver consultations, which have reported similar findings (Ontario Ministry of Health and Long-Term Care 2009, Alberta Caregivers Association 2010). Responses from the UK’s 2010 consultations with caregivers to refresh its national caregiver strategy also support our results: respite was the most requested service; carers found it difficult to extract appropriate and reliable services for individuals with challenging behaviours; carers wanted better information and advice and to proactively be offered supports by home and community care staff (HM Government 2010).
We also recognise that holding mixed focus groups, comprising of both caregivers and volunteers/professionals, in conjunction with existing caregiver support groups may have limited our findings in several ways. Established group dynamics and the presence of professional support staff may have influenced the views expressed by some individuals. At the same time, it seemed as though focus group participants had an easy and comfortable rapport with one another. This may have enabled participants to share their deeply personal stories with the research team more readily than might otherwise have been possible. It is also possible that the geographical location of data collection influenced our findings, particularly with respect to rurally located participants. While there is no doubt that there are greater challenges involved in providing services to more geographically isolated individuals, studies from urban areas in the province of Ontario (Wiles 2003, Yantzi et al. 2007) have documented the negative impact of health system rationing on caregivers to both children and elderly people.
It is likely that caregivers in our sample expressed very high levels of burden because they cared for individuals with dementia, as has been reported elsewhere in the literature (Pinquart & Sorenson 2004, Braun et al. 2009, Canadian Institute for Health Information 2010). We acknowledge that the majority of caregivers in Canada provide much lower levels of care-giving intensity (Lilly et al. 2010) and as a result, are less likely to experience such high levels of burden. Many of the recent policy advances designed to assist caregivers in Canada show promise in the likelihood that they can offer meaningful supports to low-intensity caregivers, particularly those in the labour force (Health Council of Canada 2005, Giesbrecht et al. 2010, Lilly 2010). However, these supports are not oriented to intensive caregivers to individuals with dementia. Because this subgroup of caregivers is most vulnerable to burnout, it is necessary to ensure that their support needs are better addressed.
While we acknowledge each of these limitations and their potential influence on our findings, we suggest an alternative explanation for why caregiver burden and burnout remained central to the themes which emerged. We hypothesise that, while the concepts of caregiver burden and burnout are now quite developed, the context giving rise to these negative consequences for caregivers to individuals with dementia has not improved. If anything, the homecare policy environment has placed caregivers in more desperate circumstances in the last several years.
As mentioned previously, a federal shift in 2003 to support short-term acute homecare clients served to dramatically reduce the services available to individuals with long-term health conditions such as the care recipients from our focus groups. We suggest that this new policy focus on acute homecare services to the exclusion of individuals with long-term chronic illnesses served to embed incentives for caregivers to resort to higher acuity solutions to address their support needs. In other words, this emphasis may lead to the very outcome that policy-makers are most trying to avoid: long-term care placement of care recipients. For instance, through the experiences shared by focus group members, we observed a tendency by those in the formal health system to actively ignore caregivers through rationing practices. Caregivers’ needs for relief were undermined by restricting access to respite and adult day programmes and the lack of appropriate programmes for care recipients with dementia. On the other hand, once caregivers sounded the panic button for caregiver burnout, they received relatively quick responses, having transitioned from system helpers to system users themselves. It was only at this stage that caregivers received any recognition of their own health needs.
We further suggest that incentives to actively ignore caregivers until they become patients of the healthcare system are reinforced at many levels of home and community care system planning. For example, The Residential Assessment Instrument (RAI) – Home Care is the data standard used in most provinces of Canada including BC (as well as many other countries) to determine service level provision for homecare recipients. Care recipients receive formal assessments from case managers, and additional information is gathered about their family caregiver(s). The RAI uses a computerised algorithm to predict care recipients who are at risk of adverse outcomes, including long-term care admission. Individuals with low RAI scores are a ‘low priority’ and unlikely to receive many services, while those with high scores are labelled as ‘high priority’ for services. Caregivers are not systematically assessed for their own support needs. Instead, two caregiver ‘flags’ demonstrated to have a direct and positive correlation to caregiver burnout (termed ‘distress’ by the instrument) are included in the algorithm’s scoring mechanism for care recipients at risk of institutionalization:
- • A caregiver is unable to continue in caring activities – for example, a decline in the health of the caregiver makes it difficult to continue.
- • The primary caregiver expresses feelings of distress, anger or depression (Canadian Institute for Health Information 2010, p. 3).
If these flags are triggered, care recipients are more likely to be urgently prioritised to receive services. Several such stories were communicated by participants in our study, whereby only an admission by caregivers that they could not go on resulted in the provision of assistance from the formal care system. In our view, the problem with this orientation is twofold. The larger problem (for caregivers and care recipients alike) is that this system’s primary goal is to avoid institutionalization, rather than to maintain health and avoid functional decline. For caregivers, this often means that resources are allocated only after things have been going badly for some time. Until – and unless – they exhibit signs of ‘distress’ by triggering these flags, caregiver support needs are neither systematically assessed nor addressed. Without a formal assessment tool in place, caregivers are vulnerable to being lost (or ignored altogether) in the system.
The second problem is that this orientation towards caregivers has a distinct clinical/medical orientation: caregivers can extract services only when they are at immediate risk of becoming patients themselves. We suggest that, rather than offering costly care for these individuals after they become patients of the system, we should re-orient our view to care about them preventively as partners in care provision (Grant et al. 2004). A system that views caregivers as a valuable health human resource and that adopts an occupational health and safety approach to address their support needs would offer caregivers access to services before they even need to ask, let alone require them to fight for recognition. Perhaps by providing more formal services to caregivers earlier in the care-giving trajectory, care recipient institutionalization can ideally be delayed or potentially avoided altogether, as has been demonstrated elsewhere (Brodaty et al. 2003). The significant cost savings realised by delaying long-term care placement can then be reallocated to increasing access to these formal supports.
Finally, we suggest that this current policy landscape is deeply influenced by the gendered nature of family care-giving. That women have historically been society’s caregivers is well established in the research literature (Armstrong & Kits 2001, Armstrong & Armstrong 2003, Armstrong et al. 2008). The expectation that women should continue to bear the disproportionate burden of care today and into the future – despite transitions to both the care-giving role and women’s place in society – remains a silent assumption in much of the policy literature. This gendered reality influences the degree of interest policy-makers have (or do not have) in caregivers and the types and level of commitment they are willing to extend.
In our consultations with caregivers and their advocates, we consistently heard that caregivers wait too long to reach out for help. However, in a system premised on expectations for family care-giving and personal responsibility for self-care, and which then accordingly severely rations care and actively dissuades help-seeking behaviour, we wonder whether caregivers can be expected to respond otherwise. Given the likely increase in the proportion of individuals diagnosed with Alzheimer’s disease in the coming decades, it is critical to develop appropriate support policies and programmes for caregivers now. We are encouraged by the current policy context in Canada and beyond which may offer caregivers the potential for hope. We underscore the important connection between policy context and caregiver needs in successfully operationalising such plans.
The research team thanks Lucie Ouimet (BScN, BA and MA) and Jill Mitchell Nielsen (MA Cand) for valuable research assistance, the Alzheimer Society of B.C. and local Resource Centre representatives for assistance with recruitment, and colleagues from UBC Okanagan’s Caregiver Research Interest Group. We also thank two anonymous reviewers and the Associate Editor, as well as colleagues from McMaster University’s Polinomics group within the Centre for Health Economics and Policy Analysis, for helpful comments on earlier drafts.
Conflict of interest
The authors declare no conflicts of interests.
Source of funding
The team acknowledges funding support from the Institute for Healthy Living and Chronic Disease Prevention at the University of British Columbia Okanagan, the Interior Health Authority of BC, and the BC Ministry of Citizens’ Services. Dr Lilly is funded by McMaster University and the Ontario Research Chair in Health Human Resources.