In response to the emergence of COVID-19, the Centers for Disease Control issued a preparedness checklist and guidance on how long-term care providers should respond. The guidance includes restricting all visitors except for end of life and/or other compassionate care situations. There are also recommendations to restrict volunteers and non-essential personnel (e.g., stylists, chaplains, etc.) from entering a long-term care community. Other suggestions include canceling all group activities and communal dining.

While the emphasis on prevention and control of COVID-19 is necessary and essential, especially for a population who are more vulnerable and susceptible, there are other crucial considerations. How do these restrictions and changes affect residents in long-term care, especially those with dementia? What is the impact on direct care workers? How do we provide care and support for both groups?

Without meaningful activities, a person with dementia might exhibit more behavioral expressions such as wandering. They may have a hard time understanding the infection control measures. As a result, these residents may withdraw further, feel anxious, bored, or become agitated. For employees in a long-term care community, it means more time is needed to support their residents with dementia.

In addition to addressing the needs of those residents with dementia, long-term care staff face additional challenges. There is already a shortage of certified nursing assistants in long-term care, even with the standard amount of work to be performed. The responsibility of additional infection control measures and preparedness planning to be done increases a direct care worker’s workload. Also, being on the front lines to help both residents and family members understand the new quarantine measures, which prevent them from visiting face-to-face, would be difficult. These additional responsibilities increase the likelihood of long-term care staff feeling burned out, stressed, helpless and fatigued.

While the CDC’s long-term care measures for COVID-19 address the safety and health of residents and staff, additional support is much needed. Alzheimer’s Disease International (ADI) provides an excellent presentation about providing care for persons with dementia and those who care for them in this video. ADI recommends supporting persons with dementia by finding ways to help them understand what is happening, helping them feel secure, and supporting them in accomplishing infection control (e.g., washing hands). It can involve breaking down tasks into smaller steps. It will take a multidisciplinary approach in the nursing home. For staff, it can involve strategies such as meditation time, aromatherapy, and encouraging time to interact with other staff members (e.g., group talk time). Both the residents in long-term care and the staff must be supported and shown care. It’s important to help these groups live while they survive this fast-changing situation.

Kathy Dreyer, Ph.D., is the Director of Strategic Projects at AGE-u-cate® Training Institute, which develops and delivers innovative research-based aging and dementia training programs such as Dementia Live® and Compassionate Touch®, for professional and family caregivers; kathy.dreyer@ageucate.com

Rosalyn Carter once noted that there are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers. Her quote is an accurate assessment of how being a caregiver is a part of our lives, in one way or another. There is a tipping point for becoming a caregiver, and each person can have a different experience with caregiving. Caregiving can be long-term or short-term, depending on the care recipient.

So how do you know you have become a caregiver? Next Avenue published an article on what turns us into caregivers. The article focuses on physical, safety, and behavioral challenges that cause us to take on the caregiving role. Is it important to acknowledge your role as a caregiver? The article also notes that knowing your role as a caregiver can help you understand when more help is needed, such as full-time, professional care.

Knowing and accepting your caregiving role can help you give yourself permission to seek additional help for your care receiver, and more support for you. Accepting that other people can do things for your care receiver that you cannot do, and finding that help, can be liberating. The process for realizing more help is needed can take a while, or it can be something that happens in a moment. A few years ago, one of my relatives needed assistance with bathing. He had no other family or potential caregivers available to provide this care. Even though I was his primary caregiver, I knew that bathing was something I just could not do, and I do not think he would have wanted me to take on that role. Fortunately, he was able to obtain home health and got the care he needed. I was relieved that he accepted that care, and that it was someone else providing it.

While caregiving support can vary, such as taking someone to run errands, assisting with financial tasks, or managing behavioral challenges, all caregivers provide a needed service, and sometimes need more than one caregiver to give all the help needed. Whether you accept your role or not, it is valuable and necessary.
If you still don’t know for sure that you are a caregiver, Jeff Foxworthy has something to add in this video.

Kathy Dreyer, Ph.D., is the Director of Strategic Projects at AGE-u-cate® Training Institute, which develops and delivers innovative research-based aging and dementia training programs such as Dementia Live® and Compassionate Touch®, for professional and family caregivers; kathy.dreyer@ageucate.com