Imagine you’re offered a new job that you aren’t really qualified or trained to do. The hours are long and you’re on call 24/7. The work is demanding, you won’t get paid and to top it off, people will be counting on you to perform your duties week in, week out – no matter how stressful the work, how old you are, what condition you’re in, or even if you already have a job. Do you accept the offer?
“No way,” is your likely response, but this situation is a reality for millions of unpaid caregivers. Eighty per cent of older adults and people with long-term health issues are cared for at home by family or friends, and the numbers will continue to climb as the proportion of older adults continues to rise (2). These caregivers play a vital role and take a huge weight off our healthcare system (3).
Caregiving can be a rewarding experience which many people are happy to provide for their loved ones. But the role also involves many challenges and costs to the health, wellbeing and financial security of caregivers – often to the point where they end up needing care or treatment themselves (3). Recently, the conditions of unpaid caregivers have sparked a discussion on how we can better support them.
The McMaster Health Forum – a leading hub for improving health through collective problem solving – prepared a summary of the latest high quality evidence on the topic and shared this with a panel of 10 caregivers living in Ontario. The panel shared their ideas and experiences about caregiving and discussed options to address the issues they face.
What the research tells us
The latest evidence highlights three areas that could improve circumstances for unpaid caregivers:
1. Financial security: Like everyone else, unpaid caregivers need to earn a living or have access to adequate funds. They may have to take time off from their jobs or even quit working completely, resulting in additional stress as they struggle to cope financially (1;6).
Some solutions include better public income (4) and housing support (5), or promoting a workplace culture that encourages flexible work arrangements for caregivers (3).
2. Engagement and support: The discouragement that unpaid caregivers often experience comes from believing they have to “go it alone.” Their contributions and insights are rarely acknowledged and, in fact, certain decisions regarding programs and services have done more harm than good for some families (6).
Offering support groups, handbooks, toolkits, communication training, and other resources – in person or online – can ease the burden, build confidence and encourage the development of valuable knowledge and skills (7-13). Combining more than one support strategy can even delay the need for caregivers to move their loved ones into assisted-living facility (14).
3. Tailored training for those caring for people with complex conditions: Many older adults have complex health issues like dementia or more than one chronic health condition (multimorbidity) which can present new challenges for unpaid caregivers, many of whom benefit from specialized education and training to successfully provide care in these situations (9).
More support and targeted training for caregivers of people with complex conditions may be good first steps. Case managers or other support workers can also help connect caregivers to services available in their communities (15).
What the caregivers tell us
Caring for loved ones with long-term – often complex – health issues brings value to both those receiving and giving care. But it is also challenging and worries about money and financial security only add to the stress.The panel members agreed that government-funded assistance would at least ensure caregivers aren’t worse off financially.
Meanwhile education, training and easy access to ongoing resources and support are key to helping caregivers feel confident and capable. That’s particularly important for those caring for older adults with chronic, complex conditions. Caregivers also want and deserve to be an active and valued part of a coordinated care team that includes medical/health professionals and support service providers.
The panelists recognize that progress has been delayed by barriers including lack of access to family doctors and not enough financial assistance from the government. Changing health systems and government policies is only part of the solution, however, and one that we cannot rely on. Caregivers also voiced the need to rally community support for unpaid caregivers. They believe more public education and dialogue will bring greater attention to the importance of their role and their needs.
What do you think?
Are you an unpaid/family caregiver or do you receive support from an unpaid caregiver? Share your thoughts in the comments box at the bottom of the page.
Internet connections: Family caregivers of people with dementia may benefit from online support
Person-centred care for patients with dementia may also benefit caregivers
Caring for the caregivers: Who is meeting the care needs of older adults?