They provide enormous value to both their patients and the health system – but often at a risk to themselves. A 2010 study revealed that one in six people providing informal care to seniors experience distress – and those caring for seniors with moderate to severe cognitive impairment, such as Alzheimer’s or Dementia, are most at risk.
Given an aging population and a strained health system, it’s clear that we need healthy and informed family caregivers who can provide the critical support required to meet the needs of Canadians – but how do we ensure that they don’t become our next patients?
Our studies suggest that there are a number of factors that affect caregiver wellbeing, including:
Knowledge – Caregivers who are kept informed throughout the journey feel more confident about their own skills. A participant in a 2010 study in western Canada noted, “We don’t know all this stuff. We have other lives that we know about, but we don’t know about the medical system.” Communication with both their patient and with the health team contributed significantly to caregiver health and wellbeing.
Experiences with health care providers – When family caregivers and health care providers establish good work relationships, quality of care is enhanced, care delivery is more efficient and requests by family caregivers for inappropriate levels of service are reduced. For caregivers, that relationship adds to a sense of ‘security’ that improves their ability to cope with their situation, and helps them better understand their role in the delivery of care.
The right kind of care – a recent inter-professional pilot workshop for direct care providers held in a care home in British Columbia explored the incorporation of a palliative approach into dementia care for residents. The four-hour workshop was structured to promote critical reflection and challenge participants to consider that people with dementia and their families need palliative care much earlier than during the last days of life.
Family Caregivers are clearly a critical contributor to the health system – and yet, while some services and tools for family caregivers exist, there are critical gaps in awareness of caregiver needs and in translating research results into clinical practice. If we are to successfully manage the upcoming health crisis related to an aging population, we need to continue to find better ways to care not just about patients – but about those who care for them.
Dr. Kelli Stajduhar is an Associate Professor at the School of Nursing and Centre on Aging at the University of Victoria. She currently leads an international research collaborative on family caregiving involving researchers from the United Kingdom and Australia and is the 2010 recipient of the Anselm Strauss Award, U.S. National Council on Family Relations in recognition of her outstanding contribution to family research. Find Dr. Stajduhar’s research at: www.eolcaregiver.com.
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