All posts by Kathy Dreyer

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

 

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; kathy.dreyer@ageucate.com