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The new definitions of essential caregiver or care provider

The patient’s advocate


In city centers and strip malls across the country, people are walking around, laughing, grabbing a meal with friends, some kids are returning to school and adults to offices. But in long-term care facilities, a jail-like lockdown continues. Even as states reopen, family members are still not allowed to visit their loved ones, and the consequences are becoming dire.

Essential family caregivers are vitally important. While nurses and staff attend to certain needs, caregivers are often more attuned to changes in their loved one’s health or behavior that are cause for concern. They can advocate on the resident’s behalf, call attention to these changes and help manage adjustments to care. The emotional support they provide to help honor the residents’ personal values and preferences can’t be ignored during such a critical time. They also alleviate caregiving tasks for staff and providers. But, none of these essential tasks are taking place when caregivers are forced to only view their loved ones on a screen or through a window from the outside of the building.

Many caregivers are extremely concerned and confused by the ever-changing parameters that need to be met to all in-person contact. Their questions seem simple - when and how often can I see my loved one? These requirements change state-to-state and by care facility, but a common cry is that loved ones are desperate for in-person visits. The prolonged separation from family and friends because of COVID-19 is snowballing and many see no real end in sight. We are learning that the restrictions on family caregivers, which are essential to the wellbeing of residents, have been linked to increasing dementia, broken heart syndrome and in some cases even death. Regardless of whether the long-term care facility is centered around aging, memory care or for persons with disabilities, navigating the new visitation rules is not only very difficult, but can be emotionally draining as well.

Mary Daniels visiting her husband Steve at his full-time memory care facility

In order to advocate for change, and to find a path to in-person visits for essential caregivers in every state, caregivers are uniting and getting creative. Mary Daniels decided her creative solution would be to take a job as a dishwasher in order to gain access to her husband’s nursing home. She says the best gift she can give him is to let him know he is deeply loved and never alone.

Mary Daniels finally being able to hug her husband Steve after 114 days

Mary is also a key member in an underground Facebook group with close to 10,000 members called Caregivers For Compromise – Because Isolation Kills, Too. Posts in the group demand compassion for those who find themselves in this fight. A recent post shared the excitement of a mother visiting her 32-year-old disabled daughter for the first time in 27 weeks. But, unfortunately, those visits have already been cancelled as someone at the care facility has tested positive. This example is one of few triumphs on the page, even though it was short lived. In a daily post, the group shares photographs of loved ones pre-COVID-19 and now several months into the isolation of the pandemic. The changes are truly heartbreaking and cause for concern. The weight loss, the withdrawn and distant images taken through windows. Many share the passing of their loved ones and how much they are devastated by moments and goodbyes they never got to have and now never will. The inability to say goodbye and/or be with their loved one is often truly torturous for the family members and the person being cared for. Technology is a way to stay in touch and helps decrease loneliness, but it is not a replacement for in-person contact.
As defined by the National Institute on
Aging (NIA)
Essential Caregiver
An individual who was previously actively engaged with the resident or is committed to providing companionship and/or assistance with activities of daily living.
Family Caregiver
Any person whom the resident and/or substitute decisionmaker identifies and designates as their family caregiver. As essential partners in care, they can support feeding, mobility, personal hygiene, cognitive stimulation, communication, meaningful connection, relational continuity, and assistance in decision-making.
Essential Support Worker
A person performing essential support services (e.g., food delivery, inspector, maintenance, or personal care or health care services such as phlebotomy or medical imaging).
General Visitor
Neither a family caregiver nor an essential support worker and is “visiting” primarily for social reasons.

All hope is not lost. We all need to support caregivers in their fight for an immediate call-to-action and help shine light on this pandemic-caused crisis. The Centers for Medicare and Medicaid Services has laid out guidelines to help determine the When and How essential caregivers can return to visits. One state that has clear parameters is Minnesota. They defined the Who and What of an Essential Caregiver in order to help move in-person visits forward. As shared in a recent good news post from Caregivers For Compromise, one member from Minnesota stated that after taking a class and being deemed an Essential Caregiver, she spent three heavenly hours with her mom and she will jump through all the hoops she needs to continue to see her. Minnesota illustrates that there is a path to in-person visits for Essential Caregivers, we just need to keep pushing until everyone has been reunited with their loved ones.

Check guidelines for local state information. https://www.cms.gov/files/document/covid-toolkit-states-mitigate-covid-19-nursing-homes.pdf
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