Canada’s population is aging and the role of family caregivers is becoming increasingly important in providing necessary support. It is anticipated that the proportion of individuals aged 65 and over will increase from 15 % up to 28 % by 2063 and those 80 and over will grow from 1.4 million up to 4.9 million by 2044, when they will account for 10 % of the population (Bohnert et al. 2015). More Canadians are also living with chronic diseases, with 33 % of those aged 80 years and older having four or more chronic conditions, including dementia (Butler-Jones 2010). Individuals living with dementia in 2011 accounted for over 700,000 Canadians aged 65 years and older and may increase to 1.4 million by 2013 (Alzheimer Society of Canada 2012). Family and friends are often relied upon to help these individuals continue to be active and remain connected to their communities (Eales et al. 2015).
Family caregivers, recognized as the backbone of the health care system (Butler-Jones 2010; Kitts 2012; Sinha 2012), provide informal unpaid care (World Health Organization 2012). In Canada, the costs of unpaid caregiving have recently been estimated at $25 billion (Hollander et al. 2009). A 2012 survey (Sinha 2012) found that, of the 8.1 million Canadian carers (28 % of population), 44 % were between the ages of 45 and 64 years, 10 % provided more than 30 h of support a week, 60 % continued to work while providing care, and 25 % were simultaneously caregiving and child rearing. Furthermore, approximately 50 % of family caregivers cared for seniors with health conditions (Turner and Findlay 2012) and close to half a million supported a person with dementia (often a parent or in law) (Eales et al. 2015). The overwhelming majority of caregivers (89 %) offered support for a minimum of one year, with 50 % doing so for at least four years (Sinha 2012). The care provided by family members includes a variety of activities. Most frequently, they provided transportation (73 %; e.g. running errands, shopping, attending medical appointments, participating in social events), performed tasks in the care partner’s home (52 %; e.g., preparing meals, cleaning, laundry), and assisted with house maintenance or outdoor work (45 %). Support for personal care and medical treatments varied, with caregivers offering weekly (66 and 63 %, respectively) or daily (both 34 %) support. Additionally, over 88 % of caregivers provided emotional support, including spending time and talking with the care partner, and 96 % visited or called to ensure that the care partner was okay (Sinha 2012).
Supporting family caregivers has become a national public health priority given their essential role in the healthcare system (Hollander et al. 2009). The Health Council of Canada’s (Kitts 2012) “seniors in need, caregivers in distress” report identified the need to support caregivers and recognize their indispensable contribution in the sustainability of the health care system. Caregivers require support to foster resilience (adapt well in the face of adversity) and ensure that they can continue to provide care while maintaining their own wellbeing. While the majority of caregivers report being in good, very good, or excellent physical and mental health, caring can take a toll on caregivers and leave them increasingly overburdened (Butler-Jones 2010; Eales et al. 2015; Kitts 2012; Sinha 2012). Caregivers are at an increased risk of significant physical, emotional, and financial burden if: (1) they provide more than 21 h per week of care; (2) care for persons with depression, cognitive decline, behavioural change; or (3) care for persons with terminal conditions (Butler-Jones 2010; Kitts 2012; Sinha 2012; Hollander et al. 2009; Canadian Institutes of Health 2009). The resultant stress can lead to deterioration of their health, social isolation, loss of income, and family conflict (Kitts 2012; Stajduhar et al. 2010; Dumont et al. 2009). The strain on family caregivers is anticipated to intensify as a result of the aging population (Eales et al. 2015; Smetanin et al. 2010; Dudgeon 2010).
Inclusion of evidence-informed supports for family caregivers should be an important part of any regional, provincial, national, or international strategy (Parmar et al. 2014). There is, however, a gap between what is known of the caregiver experience and what is most likely to offer support. A better understanding of the experience of caregivers and ways to foster their resilience is needed. This project aimed to hear the voices of family caregivers—their challenges, struggles, joys, and motivation for persevering through hardship, as well as their recommendations regarding education, resources, and supports that might enhance their resilience. To that end, and as part of a pre-conference activity to a CIHR planning conference “Supporting Family Caregivers of Seniors” held in Edmonton in April 2014, three 2-h focus groups were held with family caregivers residing in the Edmonton area. The anticipated outcomes of the focus groups included acquiring a greater understanding of the caregiver experience, identifying what is needed to improve service provision and caregiver support, and research priorities. The outcomes of the focus group discussions were largely centred on the experience of caregivers of seniors with complex needs. The purpose of this paper is to: (1) describe the experiences, challenges, facilitators, and rewards identified by family caregivers of persons with complex needs, and (2) outline recommendations regarding education, resources, and support to increase caregiver resilience that could inform research priorities.