The biggest barrier to advocating for family caregivers is getting them to believe they themselves also deserve to be helped.
The Caregiver Action Network (CAN) has a wealth of resources designed to support families at every step of the patient journey, from observing symptoms to dealing with bereavement. Here we present a guide to the journey that family caregivers go through supporting their loved ones and the ways that groups like CAN provide support.
John Schall, CEO of CAN, said: “Making caregivers aware of CAN is our biggest challenge. If I am caring for a family member, I will go online and learn everything about the condition, but I won’t look for support for me.”
November is National Family Caregivers Month and a perfect opportunity to let people know what kind of support is available, he said.
As well as a social media campaign encouraging people to “supercharge their caregiving” through technology and innovation, a pull-out supplement in USA Today is expected to reach millions.
“Being a family caregiver can feel very isolating. We want people to know they are not alone and that there is help out there,” said John.
The network has resources to help families and caregivers to observe and report initial symptoms, as well as work out the best treatment pathway.
“The patient and caregiver are a vital part of the healthcare team and are entitled to be part of the shared decision-making process. We have a course that will help them figure out what their family’s goals are and be able to talk about those goals with the doctor,” said John.
He added that caregivers needed to look after themselves, in order to be able to look after their loved ones. Depression self-screening tests and advice on dealing with anger and guilt are all on offer.
Practical help, such as ‘how to’ guides on medicine and care management, are also available.
John said the network can also helped when the journey comes to an end, explaining it is “every bit as difficult” as becoming a caregiver in the first place.
“We have a series of five chapters on grieving and how to get back to a new normal. We want to help people reconnect with a life they haven’t been able to live for a few years,” he said.
To find out more about the Caregiver Action Network, click here.