Written by E. Parsons, BSN, RN & Amanda Thornton RN, BSN, MSN, CIC, VA-BC
The COVID-19 pandemic has changed just about everything over the last few years, including how we care for our loved ones with dementia. Many caregivers may be wondering, “What do I do if my loved one with dementia contracts COVID?” and “How could a COVID infection impact their disease progression?” Questions like these were virtually unanswerable up until very recently as more information and research has become available. Now, organizations like the Alzheimer’s association have new insights into how COVID-19 may impact a person with dementia.
Even if your loved one with dementia has not or will not actually contract COVID, the social changes that have occurred over the last few years have most likely impacted them (and you as their caregiver) in some way. One study reports, “54.7% of people with dementia experienced worsened neuropsychiatric symptoms, with worsened agitation, apathy and depression the most commonly observed. Similarly, carers have reported increased levels of burden, anxiety, depression, and distress during the COVID-19 pandemic” (Wei, et al., 2022).
Have you been feeling like your loved one’s behaviors that were easily managed are becoming more and more difficult to handle? You are not alone. “Difficulties understanding public health information and adhering to safeguard procedures (e.g., maintaining physical distancing, washing hands, wearing masks) have made managing in lockdown or quarantine situations extremely challenging. Notably, behavioral symptoms of dementia such as disinhibition (e.g., approaching or touching strangers), and stereotyped behavior (e.g., strict adherence to routine), particularly when coupled with a lack of insight, will further exacerbate pressure on caregiving and increase vulnerability to COVID-19. Individuals with language symptoms, such as in progressive non-fluent aphasia (PNFA) and semantic dementia (SD), may also face additional communication challenges due to mask wearing, as well as reduced understanding of semantic concepts such as virus, mask, or soap” (2022).
COVID PREVENTION STRATEGIES
With all of these challenges, how can you prevent your loved one from contracting COVID? Let’s talk first about prevention. What are some simple, evidence-based strategies that you can employ today that will significantly reduce your loved one’s risk of contracting COVID?
There are a couple of low hanging fruit here which I am sure you have heard before, but it’s good to reiterate that these are likely the most important ways to prevent COVID-19:
1. Get vaccinated. I won’t preach on this, there is plenty out there you can read on your own, but it is very much the top way at this moment in time to prevent COVID, as well as prevent the severity level of COVID (such as the need for hospitalization) if it is contracted.
2. Wash your hands, and help your loved one wash theirs- routinely. For years now it is a proven fact that hand hygiene is the number one way to prevent the spread of disease, and it’s so easy! There are a myriad of ways to wash your hands- you can use soap and water, you can use alcohol based gels, foams, or the hand hygiene wipes (very convenient, and you can take those in your car!). Post a sign in the bathroom to remind your loved one with dementia to wash their hands, and help them to wash before every meal.
Those two are my top two recommendations, however there are a few others worth mentioning that you can also implement at home:
1. Keep a clean home. This seems logical, but is not easy. Lots of studies prove that germs can spread from unclean surfaces. Surfaces in the home can spread COVID-19 if someone brings it inside, and a study shows that the Omicron variant is hardier than others, lasting longer on surfaces (Ryohei 2020 et all). Daily cleaning of “high touch” areas and objects such as the remote control, cell phones, light switches, door handles, the toilet handle and faucet handles can actually go a long way to reducing the potential spread of COVID in the home. The SARS virus that causes COVID-19 is actually pretty “easy” to kill with any household cleaner, or even just good old soap and hot water. Take the time out each day to do a little cleaning.
2. If you have healthcare or respite workers entering the home be sure they are vaccinated, have washed their hands before entering, and do not have a fever of 100.4 or above or have recently been exposed to COVID.
3. If possible, limit the “traffic” through your home by not having large gatherings.
4. Keep the air flowing. COVID spreads easily in enclosed non-ventilated areas. It has a lot more trouble spreading when there is good ventilation, so when possible, keep those windows open and spend some time in the sun.
KEEPING YOURSELF AND YOUR FAMILY SAFE WHILE YOUR LOVED ONE IS INFECTED
Now, despite your best efforts, your loved one contracts COVID. In addition to the previously mentioned infection prevention strategies, you can also do a few other things. First and foremost, when any person contracts COVID-19, the first step in the infection prevention process is isolation. Isolation of a person with COVID-19 prevents transmission by cutting out social contact with other people and stopping transmission altogether. However, depending on your loved one’s level of functioning and cognition, isolation may be very difficult, if not impossible. So, if you are not able to isolate your loved one from yourself or the rest of your family, what can you do to reduce transmission risk?
Wearing a mask is especially important. Now, you might be thinking, “I live with this person, why would wearing a mask at all matter? If I live with them, I will probably contract it anyway.” Researchers are beginning to understand that the more virus particles that circulate in a person’s body (otherwise known as a person’s viral load) can directly be correlated with severity of illness and other outcomes. One study reports, “that a high initial nasopharyngeal viral load is an independent predictor of in-hospital mortality and intubation” (Said El Zein, et al., 2021). Overall, any reduction in contraction of virus particles may reduce severity of infection so anything that you can do at home to prevent contraction of virus particles is majorly important, including wearing a mask.
In addition to mask wearing, reducing exposure to virus particles might look like creating a designated space for your loved one with dementia to stay in while recovering. Any area in your home that can be separated by a wall or door will help prevent unnecessary exposure. Opening windows and letting fresh air into the space will additionally be helpful. You may also want to consider sending other family members, especially the very young, old, or immunocompromised to a hotel or Air BnB until the person is no longer contagious.
HOW WILL MY LOVED ONE BE IMPACTED AFTER A COVID-19 INFECTION?
So, how will your loved one with dementia be impacted by a COVID infection? COVID-19 is a unique virus that causes neuropsychiatric symptoms (symptoms that affect the brain) including loss of taste and smell and other cognitive symptoms like problems with attention or cognition. In many people without dementia, these types of cognitive symptoms can persist for months or years after the initial infection, so for those who actually have dementia it can potentially exacerbate their symptoms. “Scientific leaders, including the Alzheimer’s Association and representatives from nearly 40 countries — with technical guidance from the World Health Organization (WHO) — are part of an international, multidisciplinary consortium to collect and evaluate the long-term consequences of COVID-19 on the central nervous system, as well as the differences across countries. Initial findings from this consortium presented at AAIC 2021 from Greece and Argentina suggest older adults frequently suffer persistent cognitive impairment, including persistent lack of smell, after recovery from SARS-CoV-2 infection” (Alzheimer’s, 2021).
Another interesting finding by the consortium is that, “Biological markers of brain injury, neuroinflammation and Alzheimer’s correlate strongly with the presence of neurological symptoms in COVID-19 patients”(2021). Even in patients with no diagnosis of Alzheimer’s or cognitive impairment who contract COVID-19 see a huge increase of these biological markers during and after an infection. This means that proteins that are normally found only in a person’s blood who has Alzheimer’s are all of a sudden being seen in a normal person’s blood. These proteins can cause inflammation in the brain and either cause Alzheimer’s-like symptoms, or accelerate already present Alzheimer’s-like symptoms.
This is why it is so important to try to prevent an infection in the first place, but if it cannot be prevented, it is especially important to ensure that a loved one is seen by their physician as soon as symptoms begin.
FINAL THOUGHTS
COVID-19 infection in persons with dementia can be difficult to navigate. Overall, it is important that you remember to simply do the best you can with what you have. Remember to ask for help where you need it, utilize the tools that you have available to you, and most importantly, remember to care for yourself.
References
Wei, G., Diehl-Schmid, J., Matias-Guiu, J. A., Pijnenburg, Y., Landin-Romero, R., Bogaardt, H., Piguet, O., & Kumfor, F. (2022). The effects of the COVID-19 pandemic on neuropsychiatric symptoms in dementia and carer mental health: an international multicentre study. Scientific Reports, 12(1), 1–11. https://doi.org/10.1038/s41598-022-05687-w
Said El Zein,Omar Chehab ,Amjad Kanj ,Sandy Akrawe,Samer Alkassis,Tushar Mishra,Maya Shatta,Nivine El-Hor,Hossein Salimnia,Pranatharthi Chandrasekar (2021) SARS-CoV-2 infection: Initial viral load (iVL) predicts severity of illness/outcome, and declining trend of iVL in hospitalized patients corresponds with slowing of the pandemic. https://doi.org/10.1371/journal.pone.0255981
Differences in environmental stability among SARS-CoV-2 variants of concern: Omicron has higher stability. Ryohei Hirose, et al, doi: https://doi.org/10.1101/2022.01.18.476607 Hamner L, et al. MMWR 2020; 69 (19): 606-610.
Alzheimer’s Association (2021) COVID-19 Associated with Long-Term Cognitive Dysfunction, Acceleration of Alzheimer’s Symptoms. https://www.alz.org/aaic/releases_2021/covid-19-cognitive-impact.asp
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