Category Archives: The Family Caregiver

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.

Becoming a Caregiver: Knowing the Tipping Points and Accepting Your Role as a Caregiver

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;

Caregiving during the holidays: Acceptance and support

As Julie Boggess remarked in her recent blog, informal caregivers and the care they provide for care recipients represents a substantial part of the long-term care support system. Caring for a loved one with dementia is challenging and can be difficult. Both stress and burnout in caregiving are all too common, as Pam Brandon’s blog notes. This is especially true during the holiday season. The extra demands that accompany this time of year make getting the regular things done more challenging, and the expectations for getting everything done can be overwhelming.

With the holiday season upon us, how can caregivers reduce stress and the potential for burnout? There are several good resources that provide strategies. AARP offers 10 Tips for Caregivers During the Holidays. These tips provide suggestions for managing holiday activities while being a caregiver. Also, the National Institute on Aging provides hints for making the holidays more enjoyable.

One of the best ways to prepare for the additional stress the holidays bring is to manage expectations. Be prepared to discuss changes with people who may not have seen the family member in several months. It is good to prepare for the potential questions about the care being offered and medical management. Questions and offers of advice may not be helpful, but remember you are doing the best you can with the information you have now.

When my mom was moved into the nursing home, sharing her care was difficult. After working with the certified nursing assistants to help them understand who my mom had been, and what her preferences were, sharing her care was a relief. It was also beneficial to see people caring for my mom who only knew her as she was at that time. Seeing how they worked with her helped me come to terms with who she had become. Sometimes it may take seeing a person through someone else’s eyes to accept where you and the person are. And acceptance can bring relief and peace, which is always beneficial.

Overall, remember to be patient with yourself and the person you are caring for. Do your best to accept what others can offer. Some people have the capacity to give in certain ways, but it may not be in the way that you would prefer. Let go of what you can. Acceptance can bring relief, whether it is in accepting help or accepting changes.

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;