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Can you relate? Options to improve support for unpaid caregivers

The Bottom Line

  • Unpaid caregivers in Ontario provide vital services, but don’t receive enough recognition, support, or training.
  • Concerns about financial security add to caregivers’ stress and anxiety levels.
  • A panel of caregivers agreed that financial assistance, as well as support through training and education, would help ease the stress of caring for loved ones at home.
  • Caregivers want and deserve community support and to be included as an active and valued part of the health care and support service team.

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 and other resources – in person or online – can ease the burden, build confidence and encourage the development of valuable skills (7, 8, 9).


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 (10).


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.


Learn more

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?

 


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References

  1. Sinha M. Portrait of Caregivers, 2012. Ottawa, Canada: Statistics Canada; 2013.
  2. Canadian Medical Association. Healthcare Transformation in Canada: Change that Works,Care that Lasts. Toronto, Canada: Canadian Medical Association; 2010.
  3. Canadian Cancer Action Network. Canada, a Caring Society: Action Table on FamilyCaregivers - Informed Dialogue Leading to Concrete Action for all Canadians. Toronto,Canada: Canadian Cancer Action Network; 2013.
  4. Sinha SK. Caring for Unpaid Caregivers: Developing an Ontario Caregivers' Strategy. Circle of Care Meeting 2014 June 22;Available from: https://www.circleofcare.com//wp-content/uploads/2015/08/Dr.Sinha-presentation-Seniors-Strategy-and-Caregivers.pdf 
  5. Gibson M, Petticrew M, Bambra C, et al. Housing and health inequalities: a synthesis of systematic reviews of interventions aimed at different pathways linking housing and health. Health & Place 2011;17(1):175-84.
  6. MacCourt P, Krawczyk M. Supporting Caregivers through Policy: The Caregiver Policy Lens. Vancouver, Canada: British Columbia Psychogeriatric Association; 2012.
  7. Chien LY, Chu H, Guo JL, et al. Caregiver support groups in patients with dementia: A meta-analysis. Int J Geriatr Psych 2011;26(10):1089-98.                      
  8. Kaltenbaugh DJ, Klem ML, Lu H, et al. Using web-based interventions to support caregivers of patients with cancer: A systematic review. Onc Nurs Forum 2015;42(2):156-164.
  9. Boots LM, de Vugt ME, van Knippenberg RJ, et al. A systematic review of Internet-based supportive interventions for caregivers of patients with dementia.Int J Geriatr Psyc 2014;29(4):331-344.
  10. Zabalegui A, Hamers JP, Karlsson S, et al. Best practices interventions to improve quality of care of people with dementia living at home. Patient Educ Couns 2014;95(2):175-184.

DISCLAIMER: The blogs are provided for informational purposes only. They are not a substitute for advice from your own healthcare professionals.

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