Category Archives: The Family Caregiver

Easing COVID-19 Restrictions: Going Forward…Moving Ahead?

The Centers for Medicaid and Medicare Services (CMS)  recently released recommendations  for state and local officials to gradually reopen nursing homes. The CMS recommendations guide officials to evaluate the feasibility to ease COVID-19 restrictions. State survey agency and state and local health departments participate in the decision-making process. CMS provides questions to answer to assess next steps.

Decision-making questions to answer

The key questions to answer are:
What is the COVID-19 case status in the surrounding community?
What is the COVID-19 case status in the nursing home?
Does the nursing home have adequate staffing?
Does the nursing home have access to adequate COVID-19 testing?
Is there universal source control (e.g., residents and visitors wear a face covering)?
Does the local hospital have the capacity to accept transfers from nursing homes?

Also, the recommendations include additional criteria for implementation, visitation and service considerations, and surveys that will be performed at each phase.

Easing COVID-19 Restrictions

AARP provides additional information about the next steps in reopening nursing homes. Fortunately, progress is already taking place in some states. For example, in Massachusetts, visits are allowed in some communities when scheduled in advance and must take place outside.  Also, visits must include an employee.  Additionally, only two people can visit a resident while wearing face masks.

In some ways, the new recommendations offer a glimpse into the new normal.  It is likely that infection control procedures will continue indefinitely. The CMS recommendations only address protection for older adults and staff,  not the effect of the COVID-19 restrictions. As a result, it is mandatory to implement plans that focus on the long-term effects of the COVID-19 quarantine.

Supporting Staff and Residents

We must address the effects of the COVID-19 quarantine on residents and direct care staff.  Residents’ routines are disrupted. For example, residents cannot participate in group dining.  Also, family and friends are unable to visit.  As a result, residents are isolated. Furthermore, staff members work overtime to compensate for residents’ additional emotional needs. Also, staff members cope with exhaustion and compassion fatigue. Furthermore, direct care workers are not valued but are unquestionably invaluable.

Going Forward – the Next Steps

Now is the time to learn from the COVID-19 restrictions experience. We must support residents and staff to cope with the after-effects of the COVID-19 quarantine. Moreover, we must provide higher wages and more respect for direct care workers. Most importantly, they provide critical care and compassion to older adults in long-term care.  As Julie Boggess’ blog emphasizes, “these workers and the residents they care for deserve better – much better.”

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;

Compassion Fatigue: Watching for Symptoms, Finding Solutions

As summer approaches, there is a gradual easing of COVID-19 restrictions in some states. Unfortunately, caregivers at home and in long-term care still continue to face repetitive days of providing care and support.  These individuals are at risk to develop compassion fatigue.

Compassion fatigue involves a caregiver’s taking on the trauma and distress of others. Risk factors include exposure to suffering and empathic response. According to the American Institute of Stress, it is a process that takes time.  With the advent of COVID-19, things are different.


How does COVID-19 play a role? The rapid onset of the COVID-19 quarantine has accelerated the compassion fatigue process. Other factors include changes in residents’ routine, and the addition of infection control measures and personal protective equipment. The multiple effects of additional work loads and caring for residents living a new, restricted lifestyle, can and will take its toll.


Caring for loved ones and residents can be difficult. With the presence of COVID-19, the caring load is greater. The effects of continued care for extended time are troubling. The American Institute of Stress lists compassion fatigue symptoms such as loss of morale, depression, exhaustion, and anxiety. COVID-related compassion fatigue can develop quickly in long term care workers. They take on additional work hours and multiple roles  to care for residents and family members. It is important to find ways to cope with this challenge.

Meditation and mindfulness can help ease compassion fatigue. Self care is critical.  As the saying goes, “You can’t fill another person’s cup if yours is empty.” Self care can be talking to others who are going through the same challenges. Sharing frustrations can help. It might be watching cat videos or taking a hot bath. Whatever method is used, compassion fatigue needs to be identified and addressed in those most at risk.

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;

Quarantine in Long-Term Care: Prevention at What Cost?

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;

The Trauma of Relocation for People with Dementia



A sudden relocation from home for a person with dementia can be traumatic.

My husband and I have made the decision to right-size our lives and sell our house of 23 years. For many years now, I have anticipated this moment wondering how I would feel.   Surprisingly, it wasn’t a hard decision to make.  However, I recognize that moving day could be a different story.

The decision to relocate is one we made being of sound mind and body.  As overwhelmed as I sometimes feel about our move, it must pale in comparison to what people with dementia feel when they are moved to a different environment.

Easing the Trauma of Relocation

My husband and I will adapt to our new surroundings.  I will find a place for all of our things and make our new house into our home.  The people I love most will be with me,  including my fur-babies.  I’ll drive to visit my friends and attend the same church.  All will be right in our world.

This mile-marker in my life makes me think long and hard about what moving day must be like for someone with dementia.  I can’t even imagine.  The sudden loss of leaving the familiar and the people you love must be horrifying.

Stop and think for a moment how you would feel if someone walked into your home and said that you had to leave for a new place that you had not chosen for yourself.

Imagine your behavior.  Would you be crying, screaming, punching, kicking?

The AGE-u-cate Training Institute program Compassionate Touch begins with looking at life through the lens of someone with dementia.   We discuss the grief and loss that often accompanies a person with dementia when they move into a long term care facility.

Realizing that people with dementia communicate with us through their behaviors is a pivotal moment in Compassionate Touch and Dementia Live Training.

So how can we ease a transition into a long term care facility for someone with dementia?  Here are a few tips:

    • If possible, set up their new space with familiar items prior to move-in day.
    • Remain positive and keep your personal emotions in check.
    • Minimize chaos on move-in day by limiting the number of family members present to no more than two.
    • Allow the staff to immediately begin bonding with your loved one.
    • Refrain from prolonged day-long visits until your loved one is settled in and comfortable.
    • When your loved one says, “Take me home” don’t say, “this is your new home.”  Rather, “I understand how hard this is, and I love you.”

Julie has worked in Aging Services for over 30 years and has been a Licensed Nursing Home Administrator since 1990. She is a Certified Master Trainer with the AGE-u-cate Training Institute. Through her company Enlighten Eldercare,  Julie provides training and educational programs on elder caregiving for family and professional caregivers.  In addition, she is an instructor and the Interim Director of Gerontology at Northern Illinois University and lives in the Chicago Northwest Suburb of Mount Prospect, IL.