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Caregivers Face New Risks

The coronavirus has killed thousands of people around the world and the pandemic is far from over. We now know that residents of nursing homes have taken a disproportionate hit. So far, it’s unknown how many of the victims were battling Alzheimer’s disease, but the dynamics of living with Alzheimer’s disease and avoiding the coronavirus are clearly a challenge. Unfortunately, that combination poses a unique predicament for caregivers.

It’s unknown if dementia is one of the underlying health conditions that makes people more vulnerable to the virus, but dementia-related behaviors, increased age and common health conditions that accompany dementia may increase risk.

For example, people with Alzheimer’s disease and all other dementia may forget to wash their hands or take other recommended precautions to prevent illness. In addition, diseases like COVID-19 and the flu may worsen cognitive impairment due to dementia.

Add problems with the brain and nervous system to the list of complications in patients with COVID-19, say doctors, providing further evidence that it is far more than a respiratory illness. For a report on Thursday in the Journal of Neurology, researchers pooled data from 41 previously published studies of the neurological effects of the coronavirus. The most common non-specific neurological symptoms were fatigue (seen in 33.2 percent of patients), loss of appetite (30.0 percent), shortness of breath (26.9 percent), and general malaise (26.7 percent).

The most common specific neurological symptoms – which occurred less often – included disorders of smell and taste, Guillain-Barré syndrome and inflammation of the brain, spinal cord, and meninges. These tallies did not include strokes that result from blood clotting disorders caused by the coronavirus. In a report published on Sunday in Annals of Neurology, a separate team of doctors called COVID-19 “a global threat to the nervous system” and said, “the number of recognized neurologic manifestations of SARS-CoV-2 infection is rapidly accumulating.”

Caregivers of individuals living with Alzheimer’s and all other dementia should follow guidelines from the Centers for Disease Control (CDC), and consider the following tips:

  • For people living with dementia, increased confusion is often the first symptom of any illness. If a person living with dementia shows rapidly increased confusion, contact your health care provider for advice. Unless the person is having difficulty breathing or a very high fever, it is recommended that you call your health care provider instead of going directly to an emergency room. Your doctor may be able to treat the person without a visit to the hospital;
  • People living with dementia may need extra and/or written reminders and support to remember important hygienic practices from one day to the next;
  • Consider placing signs in the bathroom and elsewhere to remind people with dementia to wash their hands with soap for 20 seconds;
  • Demonstrate thorough washing of hands. Alcohol-based hand sanitizer with at least 60 percent alcohol can be a quick alternative to washing if the person with dementia cannot get to a sink or wash his/her hands easily;
  • Ask your pharmacist or doctor about filling prescriptions for a greater number of days to reduce trips to the pharmacy; 
  • Think ahead and make alternative plans for the person with dementia should adult day care, respite, etc. be modified or cancelled in response to COVID-19;
  • Think ahead and make alternative plans for care management if the primary caregiver should become sick.

Tips for supporting persons with dementia who receive home-based services:

If you currently receive or plan to receive services from a paid health care professional in your home:

  • Contact the home health care provider and ask them to explain their protocols to reduce the spread of COVID-19;
  • Check the home health care professional’s temperature before they enter your home. Anyone with a temperature over 100.4° F should be excluded from providing care;
  • Ask the health care professional if they have been exposed to anyone who has tested positive and if so, do not allow them into your home;
  • Ensure that the health care professional washes their hands upon arrival and regularly throughout their time in your home;
  • Ask the health care professional to wear a mask;
  • Be aware that bringing anyone into your home increases the risk of spreading COVID-19, even if CDC guidance is followed.

Tips for supporting persons with dementia who live in long-term care or residential care settings:

  • The CDC has provided guidance on infection control and prevention of COVID-19 in nursing homes. This guidance is for the health and safety of residents. Precautions may vary based on local situations. 
  • Check with the facility regarding their procedures for managing COVID-19 risk. Ensure they have your emergency contact information and the information of another family member or friend as a backup.
  • Do not visit your family member if you have any signs or symptoms of illness. 
  • Depending on the situation in your local area, facilities may limit or not allow visitors. This is to protect the residents but it can be difficult if you are unable to see your family member. 
  • If visitation is not allowed, ask the facility how you can have contact with your family member. Options include telephone calls, video chats or even emails to check in. 
  • If your family member is unable to engage in calls or video chats, ask the facility how you can keep in touch with facility staff in order to get updates.

Considerations if your family member’s residential facility has an incidence of COVID-19:

  • It is important to note that there are no simple answers and, at this time, there is no way to completely eliminate the risk of your family member being exposed to COVID-19. However, there are some questions to consider if you are faced with this situation. The answers to these questions can help you make the best decision for your family;
  • Keeping the person in the facility;
  • Ask the facility about their quarantine procedures. What is your level of confidence that CDC guidelines are being followed;
  • How many people in the facility have been impacted by COVID-19 (staff, residents or both;
  • Is your family member able to follow social distancing procedures(with or without help);
  • In some cases, the person may not be able to walk or move about on their own. This could help maintain social distancing.
  • Does the facility have and use personal protective equipment;
  • How many staff members interact with your family member on a regular basis? Is the facility able to limit the number of staff who work with your family member;
  • Is the facility adequately staffed to provide the level of care your family member requires?

Moving a person home:

  • What level of care does the person need on a day-to-day basis? (For example, is the person able to bathe and dress him- or herself? Are they continent? Are they ambulatory or do they need assistance moving?)
  • Is your family able to provide the level of care needed;
  • While limiting the number of people who have contact with the individual is important, it is also important to assess the number of people needed to provide adequate care;
  • Does anyone in your family have COVID-19 currently;
  • Are there individuals in the home who work outside of the home? If so, the risk for exposure is increased;
  • Is it possible to hire home care workers? This option comes with its own level of risk. 

Moving to another facility:

  • Moving a family member to another facility may be an option. However, there is no way to know whether the new facility will remain free of COVID-19 cases.
  • Is the facility accepting new residents;
  • Some facilities are not accepting new residents, depending on location;
  • Have there been COVID-19 cases in the new facility;
  • ​Staying healthy;
  • Pay attention to flu or pneumonia-like symptoms in yourself and others and report them to a medical professional immediately.

Follow current guidance and instruction from the CDC regarding COVID-19.

Tips to keep yourself and your loved ones healthy include:

  • Avoid close contact with people who are sick;
  • Avoid touching your eyes, nose and mouth;
  • Stay home when you are sick; work from home;
  • If you or the person you are caring for have regular doctor’s appointments to manage dementia or other health conditions, call your health care provider to inquire about a virtual health appointment. As a result of the COVID-19
    pandemic, Medicare has recently expanded virtual benefits to allow seniors to access health care from the safety of their homes;
  • Cover your cough or sneeze with a tissue, then throw the tissue in the trash.
  • Clean and disinfect frequently touched objects and surfaces using a regular household cleaning spray or wipe;
  • Wash your hands often with soap and water for at least 20 seconds, especially after going to the bathroom; before eating; and after blowing your nose, coughing or sneezing;
  • If soap and water are not readily available, use an alcohol-based hand sanitizer with at least 60 percent alcohol;
  • Always wash your hands with soap and water if your hands are visibly dirty;
  • Tips for supporting persons living with dementia who are in the hospital;
  • While many hospitals are restricting or limiting visitors to help curb the spread of COVID-19 and protect patients and staff, there are still ways to support the person living with dementia during their hospitalization. CDC guidance allows care partners of persons with dementia to visit if they are essential to the person’s physical or emotional wellbeing.

If visiting in person:

  • Be sure to familiarize yourself with the safety requirements of the hospital beforehand;
  • Bring your own facemask and put it on before arriving at the facility;
  • Wash your hands regularly and avoid touching your face; and
  • Limit your visit to the room of the person living with dementia. (Avoid going to other locations in the hospital.)

If you are unable to visit in person:

  • Communicate with the person through phone or video calls;
  • Give your contact information to the attending nurse and ask for it to be written on the white board in the person’s room. Find out what kind of communication will be possible and how you can expect to receive updates.

Unfortunately, the coronavirus isn’t the only transmissible disease that caregivers must avoid. Many forms of neurodegenerative disease are technically known as forms of transmissible spongiform encephalopathy (TSE). The operative word is transmissible. As such, spouses of those with Alzheimer’s disease are 600 percent more likely to contract the disease.

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Gary Chandler is a prion expert. He is the CEO of Crossbow Communications, author of several books and producer of documentaries about health and environmental issues around the world. Chandler is connecting the dots to the global surge in neurodegenerative disease, including Alzheimer’s disease, Parkinson’s disease, Creutzfeldt-Jakob disease, chronic wasting disease and other forms of prion disease.

Avatar Gary Chandler

Author: Gary Chandler

Gary Chandler is a prion expert. He is the CEO of Crossbow Communications, author of several books and producer of documentaries about health and environmental issues around the world. Chandler is connecting the dots to the global surge in neurodegenerative disease, including Alzheimer’s disease, Parkinson’s disease, Creutzfeldt-Jakob disease, chronic wasting disease and other forms of prion disease.

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