Family caregivers: Essential partners in care

Many physicians will admit to experiencing stress and frustration when navigating the health care system on behalf of a patient—a system that we know and work with daily! Now imagine that you are not a trained health care provider and instead you are a family caregiver who is new to the system and administering medications, making multiple appointments, learning new symptoms and signs to watch for, as well as providing basic care for an adult. Then, add to that the distress of watching a loved one with an illness that may rob them of the ability to function physically and cognitively. Adapting to this “new normal” takes resilience, support, and functional relationships with others.[1]

It is estimated that family caregivers provide 70% to 75% of care for people receiving home care in Canada.[2] Based on the 2012 General Social Survey,[3] Statistics Canada estimates that, in a given year, 1 million British Columbians actively provide care as a caregiver.

A recent report by the Office of the Seniors Advocate BC found that 29% of caregivers caring for a chronically ill or disabled senior in BC are distressed.[4] Distress can be physical (helping with activities of daily life), psychological (anxiety about managing work while caring for aging parents and parenting children), or spiritual (wondering how they will cope). Financial issues are frequently a source of caregiver distress as well.

Doctors of BC’s Council on Health Promotion (COHP) believes that physicians are well positioned to support caregivers. As part of a project about caregivers, COHP is developing a physician toolkit that will provide practical actions that a physician (and their practice) can take to identify caregivers, monitor caregiver well-being, connect caregivers to community resources and services, and include caregivers in patient care planning and implementation. The toolkit will also include a validated tool to monitor caregiver distress, which can be self-administered by the caregiver in the physician’s office or at home.

In conjunction with the physician toolkit, Doctors of BC is developing a policy paper that advocates for a health care planning and delivery approach that recognizes, includes, and supports caregivers as partners in care. The policy paper will commit Doctors of BC to developing practical resources to support physicians and raising physicians’ awareness of their role in supporting caregivers and of available community resources. In addition, Doctors of BC supports enhanced CME training to help physicians engage with caregivers.

The policy paper will also make a number of recommendations:

1. That the BC government develop a strategy to formally recognize caregivers as partners in health care delivery and to require the consideration of caregiver needs in health and social service planning and provision.
2. That because certain patient populations require additional attention (those with mental illness or cognitive impairments, or facing language, cultural, or socioeconomic barriers to accessing health care), the BC Ministry of Health consider patient navigator models to support these populations and increased access to case managers for all home care patients in order to shorten wait times for accessing home care and enable more in-depth case management.
3. That the federal government amend current caregiver benefits to be payable to all caregivers, not just those who earn enough income to pay taxes.

The policy paper and physician toolkit will be available in the fall of 2016. Stay tuned for further updates.

Additional statistics about Canadian caregivers:[3]

• 54% are female.
• 56% are 45 years of age or older.
• 15% are young caregivers between 15 to 24 years of age.
• 28% are sandwiched between caregiving and childrearing.
• 89% provide care for 1 year or longer.
• Caregivers who are 65 years of age and older spend the most hours out of any demographic providing care.

—Romayne Gallagher, MD
—Jon Wong, MPP

hidden

This article is the opinion of the Council on Health Promotion and has not been peer reviewed by the BCMJ Editorial Board.

References

1.    Penrod J, Hupcey JE, Shipley PZ, et al. A model of caregiving through the end of life: Seeking normal. West J Nurs Res 2012;34:174-193.

2.    Health Council of Canada. Seniors in need, caregivers in distress: What are the home care priorities for seniors in Canada? Accessed 31 May 2016. www.healthcouncilcanada.ca/rpt_det_gen.php?id=348.

3.    Shinha M. Statistics Canada. Portrait of caregivers, 2012. Accessed 31 May 2016. www.statcan.gc.ca/pub/89-652-x/89-652-x2013001-eng.htm.

4.    Office of the Seniors Advocate British Columbia. Caregivers in distress: More respite needed, September 2015. Accessed 31 May 2016. www.seniorsadvocatebc.ca/osa-reports/caregivers-in-distress-more-respite-needed.