The Essential Caregiver (EC) program is a simple concept: Allow a single person, a family member or loved one, to have a controlled visit and help someone in senior living, even during times of restricted visitation, in order to counter the often severely detrimental health effects of loneliness and social isolation.
But the implementation of an EC program takes some care, collaboration, and preparation. Processes and rules vary from state to state, and it can be tough to push change in a time of crisis.
However, having a blueprint for an EC program can make the process easier. As several states, including Indiana, Minnesota, and Oklahoma established programs, they began to share their lessons learned.
“As the pandemic continues, our concerns about the health effects isolation has on residents have rapidly increased,” says James Balda, president and CEO of Argentum. “We saw the need to take the lead in addressing these significant mental health risks in older adults and offer guidance for consideration.”
Argentum brought together a workgroup to create guidance for states seeking to start an EC program, the Essential Caregiver Toolkit, downloadable at argentum.org/essentialcaregiver.
Workgroup members from around the country participated, including the Oklahoma Assisted Living Association and Oklahoma State Ombudsman Bill Whited.
Another participant was Dan Kenyon, executive director of the Indiana Assisted Living Association. In an email interview, he shares some of the learnings from his state’s process—its program started in June—work on the toolkit, and challenges and solutions other states might face.
Q. What’s the genesis of the Essential Caregiver idea?
A. In most cases there were no official programs in place. People visited because they loved Grandma or Grandpa. Many of these family members would show up every day to help feed or care for them.
The inability to visit resulted in increased anxiety and depression for residents and loved ones alike. This was and is particularly burdensome for memory care because daily routines, which are very important to dementia residents, were disrupted.
Community staff did and continue to do an amazing job trying to “fill in” for family. Even with all these extra efforts, however, the need to find some balance between protecting these vulnerable seniors from the virus and the devastating effects of isolation was evident from the beginning.
Various states and local communities attempted to address this problem in different ways, such as making exceptions for end-of-life visits.
Other states, such as Minnesota and Pennsylvania, were also grappling with the same issue. Through discussions with our Argentum partners, it was clear this was a national issue. Argentum took the lead and pulled together an Essential Family Caregiver Taskforce [which met virtually].
Q. What were some challenges in getting the program into practice?
A. One of the main challenges was to educate lawmakers and regulators to not mandate the use of essential family caregivers.
In some areas, where community spread is high, it is just not safe to implement this type of program without adequate testing, training, and personal protective equipment (PPE).
We continue to stress this is not a one-size-fits-all approach. It may work in one area or at one community but not at another location.
Also, because of the ebb and flow of this virus, what is working today may not be possible if residents begin testing positive.
The other major problem is providing proper infection control training, testing and PPE for the caregivers. This is an ongoing battle. Much more funding is needed to adequately supply enough PPE and COVID tests for assisted living staff as well as for essential family caregivers.
The Essential Family Caregiver approach is best managed at the local level by the leadership at the community, working with families, health departments, and the state and local ombudsman.
A key factor is to set the expectations up front, before caregivers are given entrance to the community. Many community directors sent letters and emails and posted requirements on their websites explaining exactly what is needed for a person to qualify and be able to care for a loved one as an Essential Caregiver.
Q. What are some things those starting a program should keep in mind?
Effective early communication with families is essential.
Partnering with local hospitals and labs and working with health departments are some ways that communities are overcoming the barriers of testing and PPE.
Also, one of the silver linings of dealing with this pandemic is better collaboration among all levels of health care.
Hospitals, skilled nursing facilities, home care agencies, social services, and more are all working closely together to share information and supplies.
I believe this will continue well after the pandemic is over. This type of collaboration will greatly benefit our seniors in providing more seamless transitions between disciplines and result in better care and clinical outcomes.
Q. Do you feel such programs will extend beyond the pandemic—beyond this time of immediate need?
Yes. I believe there is no better ally for our residents than a trained Essential Family Caregiver.
At the core of senior living is the ability to support a resident’s independence and enabling them to keep their relationships with loved ones and friends.
A trained and educated essential caregiver can be a best friend not only with the resident but also with the community. Assisted living communities welcome involvement of families and friends—it enables a community to be more vibrant, friendly, and home-like.
I can see essential family caregivers being even more involved in activities, outings, and socialization, long after the pandemic has passed. Also, the increased communication and camaraderie developed between professionals will greatly increase resident satisfaction and provide better care.