“There are only four kinds of people in this world…
Those who have been caregivers
Those who are currently caregivers
Those who will be caregivers
And that pretty much covers us all”
At some point in life, nearly all of us will be caregivers for our parents, friends, partners, neighbours or family members. Most of us don’t realize we are in this informal (unpaid) role. We see it as just “helping a person we care about”. Yet, in the health care system, caregivers are an essential part of the patient's journey. Caregivers navigate the options; work with clinicians to diagnose or develop a care plan; find and organize the right services; accompany patients at hospitals and doctors' offices; cook meals; provide transportation; and can be on duty 24/7 when they live with person who requires care.
Caregivers of someone who is ageing can find themselves on a long and complex journey lasting several years, given our longer lifespans, dealing with multiple health conditions including dementia. Fear, uncertainty, loss and high levels of stress can be a part of this journey. As the rising number of baby boomers age, there will also be more caregivers in need of supports in our communities, health care system, workplaces and schools.
Our team at Collaborative Aging recently co-led a consultation reaching over 850 caregivers and health care providers within Ontario’s Central Local Health Integration Network (LHIN), which comprises sections of northern Toronto, a portion of Etobicoke, most of York Region and South Simcoe County. Our findings indicated that while over 67% of caregivers are asked for input on the care plan for the patient, only 37% of caregivers reported that health care providers asked them about “how they are doing, or if they had any questions.”
In the asking of this simple question in the right tone and way, it can serve two purposes:
This is what caregivers are saying they need. Of the top five things that caregivers said they want from health care providers, 60% said they want health care providers to listen to their concerns.
As part of our commitment to quality health care, the philosophy of patient and family-centred care has translated into health care providers routinely asking both patients and caregivers for input when developing a care plan for a patient.
It is now becoming clear that health care providers need to take it one step further by reaching out to caregivers to ask them how they are doing, and to listen to what they have to say. Caregivers want to be heard and be better supported. By asking a simple question and offering follow-up supports, this will help caregivers to achieve the delicate balance between providing care for someone else while maintaining their own self-care and well-being.
To help guide health care providers improve the caregiver experience, we developed The Caregiver Support Framework. The Framework includes many improvement ideas to empower and better support caregivers. With the right guidance, and the right questions, health care providers can better support both caregivers and the people they care for.
Sue Lantz, BA, MPA, is the Founder and Managing Director at Collaborative Aging, and an Advisory Board Member of Ryerson University’s National Institute on Ageing. Sue specializes in healthcare policy, operational change, service design and delivery in the fields of seniors care (home and community and residential settings), and health promotion and prevention.