Project Rationale

Support for the caregivers of older adults is vital.

Caregivers make important contributions to their families and to society.

  • Seventy-five to eighty-five percent of the care today’s seniors receive is provided by family and friends caregivers, [1] 60% of whom provide care for more than three years.[2] It is estimated that if all the services provided by informal caregivers in the community was replaced at rates paid to home healthcare providers, the value would be $25 to $26 billion.[3] And the number of seniors needing assistance is expected to more than double between 2001 and 2031.[4]
  • With the aging population the number of seniors providing care will also grow. One in four caregivers is over age 65[5], many of whom are likely to experience their own age/ health related challenges,[6] and are at risk of becoming care recipients themselves. Supporting them in their role as caregivers lessens this risk and the additional health care costs this would entail.
  • Most care recipients are elderly, although this is not exclusively the case. More than half (57%) are 65 years of age or older, and 17% are at least 85. At the same time, one in four are under 45, most of whom are children (minors or adults) being cared for by a parent. Parents being cared for by their children are mostly 75 and older, while spouses/partners range more broadly in age, with most between 45 and 84 years of age.
  • Among caregivers who are employed, one in four faces challenges at work (e.g., increased absenteeism for illness and caregiving responsibilities), with economic implications for their income now and in retirement, and for their employers[7], all of which contributes to both immediate and future burdens on society.
  • Caregivers continue to provide care when the recipient is institutionalized[8], an important  consideration with the challenges in staffing long term care facilities that will only grow with the aging workforce.

Caregivers: In Need of Support

While caregiving has many benefits it is also associated with financial strain and with physical and psychosocial symptoms (e.g., depression, stress, burden, fatigue, feelings of anger, guilt, grief and loss, frustration, loneliness, isolation, and  decreased  well-being and life satisfaction)  placing the physical and mental health of the caregiver, and their ability to continue to provide care, at risk [1].  Almost one third of those providing care to seniors with a dementia, experience depression[2]. Negative psychological and health outcomes have been associated with low levels of social support.[3] In addition, there are immediate and future financial costs related to the provision of unpaid labour; out of pocket expenses incurred through purchasing equipment, supplies, and services; or reduction in employment income through reduced hours or missed time, turning down promotions or training, or even leaving the labour market to provide care.[4],[5] ,[6] As a result, caregivers may find themselves without immediate and long-term financial security, perhaps requiring social support.

In spite of these risks to caregivers’ well-being, and all that this implies, in most Canadian jurisdictions caregivers’ needs are not formally acknowledged, assessed, or addressed by health and social services, and often service providers lack evidence-informed tools and resources to do so. Caregivers have the right to have their own needs assessed, not just in relation to those of the seniors for whom they are providing care.

Most public policies have been developed without taking into account the needs that affect caregivers of older adults. Their contribution has been mostly overlooked, largely under-valued, and even undermined. Often these policies have unintentional negative effects on caregivers and their families, potentially increasing the burden on themselves, those they care for and the health care system.

Without recognition of the importance of caregivers to the health and social service systems, their inclusion in policy making, and adequate support for their role, the tremendous social and economic contribution caregivers make will be jeopardized.

Policies programs and services that value and support caregivers and their role can promote caregivers’ well-being and reduce the potential risks to these most valuable individuals.

Using the Caregiver Toolkit can help build a shared community of practice without adding to workload or resource issues. In turn, including caregivers’ needs strengthens their resiliency and the sustainability of systems that support them.

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