Family caregivers play an increasingly central role in health care these days. In Utah alone, more than 330,000 family caregivers provide roughly 300 million hours of unpaid work, valued at $4.1 billion annually, according to the AARP.
If you’re one of them, then you know that family caregivers assume many crucial roles and responsibilities, often with little to no training or experience beforehand. It’s important that they continue to do so for a number of reasons. Providing at-home care for family members preserves autonomy and social support networks for the individual, ensures that loved ones can remain safe in either their own or a family member’s home, and delays expensive and disruptive moves to assisted living facilities.
While it provides a great deal of benefit to those being cared for, for the caregiver, it comes with many risks. At-home family caregivers jeopardize their own physical, financial and emotional well-being.
As part of a project funded by the Patient Centered Outcomes Research Institute, my colleague Christie North and I are hosting four conferences focused on family caregiving issues. During our recent community engagement conference at the David Eccles School of Business, we met with family caregivers, primary care providers who see elderly patients and representatives from elder advocacy organizations to explore how family caregivers can be more effectively integrated into the patient’s care team.
Here are three strategies that family caregivers can utilize to ensure that they’re able to provide care for their loved ones, while also taking care of themselves.
1) Participate in patient care early and often
Primary care providers suggest that a caregiver’s early participation in decisions about patient care, as well as inclusion in that patient’s health care team, can improve their overall outlook and experience.
Caregivers play an important role in supported decision-making with the patient and health care provider. Being involved in decisions about care helps ensure that the care plan will be feasible for the patient and his or her informal care team. This can prevent a lot of potential stress for the caregiver down the road.
As an at-home caregiver, you may be more willing and able to perform the medical tasks necessary to support your loved one if you receive the proper training. By participating in patient care early and often, caregivers have more opportunities to learn how to best assist their loved one.
If a caregiver is involved in patient care from the very beginning, they may also be able to assist in spotting “warning signs” that the patient may need further medical attention.
2) Ask to be identified in your family member’s electronic medical records
With your family member’s permission, you can have your contact information noted in their medical records and be named as a “proxy.” This gives you permission to receive information about the patient’s health status and care plan. You may also be able to view doctors’ notes and after-visit summaries through your family member’s electronic portal. This can help you better understand the doctor’s plan of care, keep you aware of any changes made to your family member’s medications, and remind you when to schedule follow-up appointments.
If you are identified in your loved one’s medical records, all members of the professional care team will know who to contact when needed.
3) Accompany your loved one to medical appointments
While it may not always be convenient, it can be very beneficial for both you and the family member you’re caring for.
Two sets of ears increase the likelihood that what the doctor says will be remembered. You can help ensure that you and your family member understand what the doctor says as well as ask questions to clarify anything you are unsure about.Comment on this story
Prior to the appointment, prepare a list of issues to be discussed and decide together which role each of you will take during the appointment. Once you are with the doctor, be sure to ask questions so that you and your loved one can fully understand his or her health status and what needs to be done to keep them healthy.
If you or another family member find yourselves caring for a loved one, or, as is increasingly common, caring for multiple loved ones, definitely take the time to utilize these strategies. Family caregivers need to take care of themselves, too.