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; kathy.dreyer@ageucate.com

Touch as Communication: Connecting with a Care Receiver

How do you feel about being touched? It probably depends on who is touching you, and why. Are you comfortable touching someone who is not family or a close friend? Some people are open to various forms of touch, such as hugs, while others are more reserved in touching or being touched. How do you know the difference? It’s obvious when someone does not want to be touched, almost more than when a person is receptive to touch. The message can come across without that person saying a word.

When a person with dementia is unable to verbalize an unmet, urgent need, their form of communication might be expressed through behaviors such as hitting or crying. How do you communicate with someone who is unable to tell you what they need? The Family Caregiver Alliance (FCA) offers ten tips for communicating with a person with dementia. As FCA notes, it’s important to listen with your ears, eyes, and heart, and to respond with affection and reassurance. Touch plays an important role in communicating affection and reassurance, whether through a hug or holding hands.

Touch can also help a person interpret their world and make sense of their surroundings. It is a pathway to connecting with a person with dementia who might be in distress. If a person with dementia suddenly moves into a long-term care facility, trauma can be expected, as Julie Boggess’ wonderful blog earlier this month noted. Touch creates a connection between people in ways that cannot be expressed in words and goes deeper than verbal communication. While touch is a powerful means of communicating, caregivers in a long-term care facility may be reluctant to communicate through touch.

Caregivers may fear their touch being misinterpreted or unwanted. Their feelings may also be related to the fear of getting too close to their care receivers. While these fears can be understood, the use of touch is powerful and meaningful for both care partners. A person who does not want to be touched will communicate that message non-verbally through moving away, stiffening their neck, or closing their posture (e.g., crossing their arms). When appropriate, touch is a form of communication that can transcend words to convey emotion, caring, and compassion to a person who may or may not be able to respond verbally. Through the power of touch, care partners are engaged emotionally, socially, and soulfully. It enables care partners to be fully present and connected in the moment and is much needed in providing person-centered care.

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

Loving A Loved One Through Dementia

The mention of Valentine’s Day evokes thoughts of love, candy, romantic love and friendship. Expressions of love and kindness are exchanged through gifts and cards. For some people, Valentine’s Day is a special, sentimental occasion. For persons who are caring for a loved one with dementia, Valentine’s Day might feel like another reminder of the challenges in loving a person with dementia.

Caregivers of persons with dementia preserve the memories of their loved ones and help fill in the gaps when memories or words can’t be found. They provide support when emotions surface and when their care receivers are not so lovable. Personality changes in dementia can cause a loving, caring person to exhibit anger and combative behaviors. It is hard enough to cope with a loved one’s changes in memory and the loss of the ability to do things that were second nature to them. When a loved one with dementia makes accusations, becomes paranoid, or wanders away from their home, it is difficult to show love and patience. Caregiving for a loved one with dementia is time-consuming and can last for years.

The Centers for Disease Control (CDC) estimates that, in 2019, caregivers provided 18.5 billion hours of care for persons with Alzheimer’s disease and related dementias. The CDC also notes that more than half (57%) of the persons caring for loved ones with Alzheimer’s disease and other dementias will be in that caregiving role for at least four years or longer.

Caregivers show their love in the everyday activities of caring for their loved one. Taking care of others shows love and devotion. Caregivers routinely find ways to do things that they didn’t know they were capable of doing. They don’t think about it – they just do what needs to be done. It is love that helps carry them through, and love that can keep them going.

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


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.

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