Supporting Natural Caregivers:
Innovative Ideas from Around the Globe
Like many other Western countries, Canada is experiencing a demographic shift towards an aging society. This shift will create challenges for the health-care system as Canadians consider issues of aging, long-term care, and ultimately, end-of-life care. Aging and end-of-life care became medicalized during the previous century, but over the last few decades there has been a movement towards a public health model of aging. This model encourages everyone to take responsibility for care of older adults and seeks to enhance community support and engage other social institutions and structures. One facet of this has been a more thoughtful consideration of the role of natural caregivers and the relationships, networks, and social capital that sustain and empower them.
A 2016 public opinion survey of Canadians conducted by Nanos Research for Cardus found that Canadians highly value the ability to manage the health care of their parents. Yet, 60 percent of respondents believe society is doing only an average job in promoting the care of elderly parents.1 The survey captured the urgency around this issue when respondents reported that they expected the number of seniors they would be providing care for in the next 10 years to double.
Currently, Canada assists caregivers through a number of federal and provincial initiatives. These initiatives primarily aim to offset the cost of caregiving and to protect employment status. While these provisions offer baseline support, the growing demand on caregivers will require the mobilization of community support systems. This paper acknowledges the current federal and provincial caregiver policies, but explores the potential social structures that could be mobilized to directly and indirectly support caregivers.
The central focus of the paper is to explore innovative international initiatives that build on community connectivity to support natural caregivers and those they care for. The initiatives are consistent with a public health approach and move towards the creation of a culture of care.
First, the paper develops the framework for supporting natural caregivers and examines the statistical profile of caregivers in Canada. Next, the current federal and provincial caregiver support programs are reviewed. The third section of the paper explores Canadian and international examples of innovative initiatives that support natural caregivers directly or indirectly. These examples are categorized under two headings: mobilizing supportive communities, and building caring living environments.
This paper approaches aging and end-of-life care through three lenses that are outlined in greater detail in the Cardus report, Death is Natural.
Natural death: Social systems should support the desires of Canadians for a natural death. By natural death, we mean a death by natural causes in the environment that is most natural to the individual, and surrounded by their natural caregivers. This approach seeks to identify the wide spectrum of stakeholders that play a part in supporting caregivers and those receiving care.2
Social architecture: We engage this term as a means of speaking of the full range of social institutions available to caregivers and those receiving care. Attention is paid to developing and sustaining community support, recognizing the challenges of social isolation and geographic separation. Constructing social architecture also means honouring the full human person beyond “beds” and “cost analysis” to uphold the dignity of the care recipient and their caregivers.3
Continuum of care: This lens recognizes that caregiving and care receiving are a journey. Care options should not be a series of alternatives but a continuum of care respecting the support structures and settings of those receiving care. The continuum of care lens also recognizes that the perception of aging and end-of-life care can be clarified through wider community engagement.4
Aging and dying are uncomfortable topics in our culture, yet the potential social capital that can be mobilized through broader community engagement is promising. A public health approach to aging acknowledges that everyone has a role to play and strives to develop a sense of community responsibility.
Compassionate Communities of Care
An emphasis on creating compassionate communities of care was derived from the World Health Organization’s healthy cities initiative. The concept was advanced in the palliative care field during the late 1990s and 2000s.5The model focuses on community involvement with attention to the provision of social care. Integrating natural caregivers is an important aspect of the model. The values embedded in the compassionate care framework of connectivity, community mobilization, and social transformation towards a culture of care, animate Cardus’ exploration of innovative models of care.
2. Who are Canada’ s natural caregivers?
Natural caregivers shoulder a significant amount of the provision of care in Canada. About 46 percent of Canadians ages 15 and over have cared for a friend or family member with long-term health, age, or disability issues.6 Among care issues, age-related issues are the most prevalent care need.
As might be expected, natural caregivers are often a friend or relative of the person receiving care. Of those providing care, almost half do so for a parent or in-law.7 Of the 28 percent of caregivers who provide care to terminally ill care recipients, 41 percent provide such care to a parent.8
The age of the typical caregiver in Canada often reflects the care recipient. For example, the largest cohort of caregivers is ages 45 to 54, reflecting the fact that most care recipients are parents or inlaws. The chart below illustrates how the care recipient’s age correlates with the caregiver’s age.
A 2012 study by Statistics Canada found that most caregivers had provided care for more than a year with about half of caregivers providing care for over four years. In most cases, these caregivers were caring for an ill spouse or child.9 Most caregivers spend under 10 hours a week performing caregiving duties, but 10 percent of caregivers are providing 30 or more hours a week of care.10
Most caregivers report that they are managing their duties, but increases in intensity and duration of care provisions take a toll. About half of caregivers report feeling anxious or worried, with other common experiences including disturbed sleep and irritability. About 35 percent of caregivers reported feeling overwhelmed.11 A report published by the Canadian Medical Association suggests that caregivers are themselves at risk of poor health outcomes due to strain.12
Care requirements dictate the intensity of care. The Vanier Institute of the Family has created a chart that illustrates the diverse caregiving requirements based on the level of need. As reflected in the Vanier chart, those providing end-of-life or palliative care have no degree of control over a situation that requires intense involvement. About 3.7 million Canadians report having provided end-of-life care.13
It’s clear that caregivers in Canada would benefit from an increased sense of support. It’s also true that caregivers face diverse challenges that cannot be accommodated by a one-size-fits-all program.
Part of experiencing a natural death is the environments that are most natural to the person receiving care. Receiving palliative care in a home environment is preferable for many care recipients but it is also the preferred environment for many caregivers. Of the 621,000 people who provided palliative care in 2012, about 35 percent did so in their own homes. Another 17 percent said they would have preferred to have provided care in their own homes.14
Sources of support
The level of support a caregiver may require is conditioned by the intensity of the caregiving and the nature of the relationship with the recipient. A higher intensity of caregiving that involves many hours a week requires a greater degree of financial support.
When a helping hand is required, people naturally turn to those in their immediate social networks. This is true when caregivers seek sources of support. About one in five caregivers receives some form of financial support. About 12 percent of caregivers receive financial support from other family members while about seven percent receive assistance from a government program.15
Financial support is an important factor in caregiving, as one study suggests that this kind of support can reduce the probability of a care recipient entering a long-term care facility by 56 percent.16 It is telling that social networks continue to be the first sources of financial support.
3. Survey of current caregiver support policies
The federal and provincial governments have established policies in support of natural caregivers. These policies most often aim to protect employment status and offset financial costs in the form of grants, benefits, and tax refunds.
The Compassionate Care Benefit (CCB)
The CCB was established in 2004 and expanded in January 2016 to cover a maximum leave of 26 weeks. The benefit is issued under Employment Insurance and eligibility requirements include a qualifying period in which caregivers must have accumulated 600 insured hours of work within the previous 52 weeks. One limitation of the benefit is that it is available only to caregivers providing care to the gravely ill or those at significant risk of death.
A pilot project initiated in August 2016 allows caregivers to receive some additional income while on claim. The Working While on Claim pilot project allows caregivers to keep 50 cents of their benefit for every dollar they earn up to 90 percent of their insurable earnings. Caregivers can agree to the terms of an earlier pilot project that allowed an earnings allowance of $75 or 40 percent of their weekly benefit.
Family Caregiver Relief Benefit
This benefit is a tax-free lump sum amount to support military veterans when natural caregivers are temporarily unable to provide care. The benefit covers the cost of care while a natural caregiver takes time off or addresses their own health and self-care needs.
Federal Tax Credits
Family Caregiver Amount
Caregivers are eligible for this tax credit of $2,093 (2015) if they can claim one or more of the following:
•Caring for a spouse or common-law partner with a net income under $11,327;
•Caring for an eligible dependent;
•Sharing a dwelling with a dependent who meets certain criteria. In this case, caregivers may be eligible to claim an amount above $2,093.
Caregivers can claim up to $4,608 or $6,701 when combined with the Family Caregiver amount.
Eligibility requirements include maintaining a dwelling where they live with a dependent or spouse/common-law partner’s dependents who are 18 years or older, and for whom they have legal custody. The dependent must earn less than $20,343 (2015) annually.
Infirm Dependent Amount
Caregivers can claim up to $6,700 including the $2,093 Family Caregiver Amount for an infirm dependent 18 years old or older, for whom they have legal custody. The benefit can be divided among spouses.
Disability amount transferred from dependent
Under certain conditions a caregiver may be eligible to claim all or part of a dependent’s disability tax credit.
Home Accessibility Tax Credit
The HATC is a non-refundable tax credit to assist in making homes more accessible. The aim of the HATC is to assist seniors and persons with disabilities to upgrade their dwellings to increase mobility and care. While the credit is targeted to seniors, it could reduce strain on caregivers by allowing care recipients to age in place.
Provinces and territories
There are various caregiver support programs offered at the provincial level, although eligibility requirements and benefit amounts vary from province to province.
All provinces and territories provide unpaid compassionate leave, with Alberta being the latest to do so in 2014. While qualifying factors can vary from province to province, most provinces and territories grant eight weeks leave to be taken within a 26-week period. Quebec and Saskatchewan offer more robust leave policies.
Quebec is the only province to offer refundable tax credits for caregivers where other jurisdictions promote non-refundable credits.
The chart on page 15 displays the provincial programs that correspond with federal programs. As the chart indicates, provinces fund respite services, though the degree of funding varies from province to province.
There are a few noteworthy provincial programs for caregivers. In 2011, Manitoba created the Primary Caregiver Tax Credit which recognizes the broad spectrum of caregiving relationships. Under specific conditions, the credit can be claimed by caregivers of spouses, relatives, and even neighbours and friends.
All provinces and territories offer coverage for at-home respite care as noted in chart 3, though there are no uniform criteria or standard amount of coverage. Home respite care is offered at no direct cost to First Nations and Inuit Health Branch programs, as well as the Northwest Territories, Nunavut, Yukon, Manitoba, and Ontario.17 Partial cost for home respite services is available in British Columbia, Alberta, Saskatchewan, New Brunswick, Prince Edward Island, Nova Scotia, and Newfoundland and Labrador.18
Federal and provincial grants and refunds are the most accessible policy levers available to the state in support of natural caregivers. The fact that these tools are available to caregivers communicates that governments recognize that natural caregivers are an important part of the care continuum.
According to a Statistics Canada report, as of 2012 only about 12 percent of caregivers providing end-of-life care have ever accessed the CCB.19 This is below expectations and many factors may contribute to this including poor promotion of the benefit and the limited caregiving circumstances to which the benefit applies. Many assessments of the CCB have been conducted with a range of proposed improvements including converting the benefit to a refundable tax credit.20
While policy adjustments are important, caregivers are more likely to turn to their own social networks for support, as shown above. In the next section, innovations that support caregivers and promote a culture of caregiving are explored. These innovations find their genesis not in state policy but most often within caregiving communities themselves. There is an abundance of opportunities for innovative thinking within the social institutions that function between the state and the market. This doesn’t preclude the state or market as actors, but recognizes the social capital available in caregiving communities.
4. International innovation
The creation of support structures for caregivers will become more urgent in the years ahead. The challenge presents an opportunity to engage in creative and innovative methods of supporting caregivers in their work.
This section examines innovative practices from around the globe that engage social institutions and contribute to the development of social architecture. The programs and models directly support caregivers, engage new supportive relationships, or indirectly ease the strain on natural caregivers. The models presented below address issues relating to aging or end-of-life care. The examples are divided into two broad categories: mobilizing supportive communities, and building caring living environments.
Mobilizing supportive communities
As noted above, aging and end-of-life care has been undergoing a shift over the last few decades toward a public health model that encourages broad community engagement.
The compassionate community model is a legacy of this approach. The model seeks to engage the community as a place of understanding and a resource for caregivers and care recipients.
Dr. Allan Kellehear, one of the leading minds behind compassionate care communities, identifies the role of community and its absence in the modern experience of illness and care:
In the last 100 years of western European cultural life we have witnessed a growing disconnect between the basic family unit and their wider connections with extended family and broader community networks. At the same time, we have witnessed a rising dependency on professional health services. Today, that set of cultural developments has led to a polarized view of care for older people, the chronically and terminally ill, as well as the bereaved. Care for these populations is now widely viewed as the responsibility of family or of health services. This polarized view is both an incorrect and unsustainable cultural and health policy position. Communities are able to do more to support families and health services and to bring practical resources and important supports to both.21
Compassionate communities aim to shrink the gap between communities and natural caregivers and health services. Kellehear argues that “care for one another at times of health crisis, and personal loss is not simply a task solely for health and social services, but is everyone’s responsibility.”22
Our current culture is uncomfortable and anxious about aging and dying, hindering a robust conversation about how to mobilize the community to care for the ill and for their natural caregivers.
The absence of robust community involvement in the care of the aging and dying has been accompanied by “contemporary challenges of social isolation, the professionalization of dying, inequity of access to services and changing demographic trend.”23
Research suggests that this lack of connectivity and the accompanying social isolation are detrimental to health. Professional health care alone is insufficient in meeting the challenge. Researchers Sallnow, Richardson et al write in their recent review, “Rather loneliness, stigma and other social problems are best tackled by friends or community members rather than healthcare professionals. A strong community response augments rather than supplants the professional response.”24
Building compassionate communities encourages and supports natural caregivers in their role. One strategic step is to increase awareness about aging and dying within the community. Public awareness creates space for natural caregivers to speak about their experiences and to develop supportive relationships with other caregivers.25
Public awareness also counters social isolation, both for the care recipient and for natural caregivers. Raising awareness increases the capacity within communities to support caregivers, encouraging everyone to take responsibility for care and hands-on support.26