How Caregivers And Dementia Patients Experienced The Coronavirus Crisis

The worst of the COVID-19 crisis has now passed. The virus still exists, so there’s still a need for precautions and wisdom, however we are well past the pandemic stage. In many ways, COVID-19 has simply become a part of life.

We wrote this article in the height of the pandemic, talking about some of the unique effects that COVID-19 had on people with dementia and their caregivers. While some of the effects no longer apply, this part of our history is still worth talking about. It’s important to remember that crises like COVID-19 have different effects for different people and populations.

Challenges Faced During the Pandemic

• No Hospital Visitors
• Early Treatment and Hospital Visits
• One at a Time
• Everything takes Longer
• Risks of Exposure
• What Happens if the Caregiver Gets Sick?
• The Impacts of Isolation
• Seniors Not Taking the Situation Seriously
• Too Much Time Together
• The Risks of Nursing Homes

No Hospital Visitors

Hospitals across the nation made changes to protect their patients and staff members from the coronavirus spread. Many banned visitors entirely, preventing people from riding with loved ones in ambulances, and requiring people to visit emergency departments on their own, rather than with family members.

The measures were important, of course. But, they also ignore some of the complex needs of our vulnerable population.

As one author pointed out, a hospital stay can be just as damaging for some seniors as the coronavirus itself, perhaps even more so.

This is particularly true for dementia patients, including those with mild cognitive impairment. Seniors in this situation can’t always make good decisions. They don’t always understand what is going on or even remember where they are.

Such issues become even more pronounced during times of stress.

To make matters worse, many cognitive challenges aren’t obvious from the outside. Stressed and busy staff members might not realize that the patient doesn’t understand what is going on or that they’re answering questions accurately.

A cognitively impaired senior may not know what is wrong with them, where they are, where they live, or what medications they are currently taking.

Research also suggests that having a single caregiver by a patient’s side can be critical for cognitively impaired patient, especially those at risk of delirium.  

Thankfully, some hospitals did try to address this issue.

• Some hospitals differentiated between caregivers and visitors, allowing caregivers to be present in some situations.
• Other hospitals didn’t allow caregivers at all, but worked to remotely include caregivers in the care team to the best extent possible.

Unfortunately, there were also plenty of cases where hospitals didn’t have caregiver-specific policies. This may still be the case – and an area that desperately needs changing.

Early Treatment and Hospital Visits

The pandemic stretched the resources of hospitals, making it difficult to meet the needs of patients. Care also needed to be taken in every situation, creating extra challenges for promoting senior health.

One caregiver talked about a specific policy-related situation. In their case, seniors with high temperatures needed to be sent to the hospital or to the family home. But, for a patient with advanced dementia, both approaches have severe limitations. The author summed up some of the key challenges like this:

The caregiver’s perspectives here are reasonable and well thought-out, yet the key staff in the case didn’t seem to know how to respond to the challenges.

This wasn’t the only case like it. Other caregivers talked about cases where nursing homes sent patients to the hospital if the patient showed even minor symptoms – regardless of the implications for the patient or their family. Doing so could end up infecting the senior rather than protecting anyone.

Another forum member talked about how their father cut his own earlobe and the assisted living facility forced him to go to hospital, against the wishes of the forum member (who had POA).

It’s an area of serious concern, as dementia patients often do not fare well at hospital and families are not always in a position to receive them back at home.

This also highlights the topic of advance care directives and patient’s rights to decide their own care.

One at a Time

Social distancing practices often restricted the number of people in any one place – and the distance between them. While the approaches varied across states, local areas, and location, many places focused on one person at a time.

For example, grocery stores often asked for just one person per shopping cart or per household. Some banks and pharmacies only allowed a single person to enter or interact with a staff member at a time.

This is a serious problem for caregivers who cannot safely leave their family member alone. The issue is particularly true for dementia patients, who may wander off and get lost if left alone for even a short period of time.

Everything Takes Longer

Here’s another serious issue – the COVID-19 pandemic meant that everything started taking much longer. That includes tasks like shopping for groceries, picking up medication, or visiting banks.

Seriously, social distancing and the length of lines meant that it could sometimes take hours just to shop for groceries.

This can be a major problem for caregivers because going out for errands often means leaving the care recipient at home on their own.

I remember this from my own experience as a caregiver. Every trip outside the house had to be carefully weighed up. The person I was caring for could safely be left alone, but the risk of issues grew dramatically the longer I was away.

The weekly grocery shop, which took less than two hours all told, was always stressful. While it was amazing to be out of the house, there was always this niggling worry about what I would face upon my return.

I can’t even imagine doing that during the height of the COVID-19 pandemic.

Risks of Exposure

Going out also came with risks. Every social contact created the potential for the virus to spread. The risk wasn’t limited to person-to-person contact either. The coronavirus can live on surfaces and people often touch surfaces without even thinking about it.

This issue is compounded by the fact that the virus can be spread by people who do not have symptoms.

For young people with robust immune systems, the risk from the coronavirus was relatively low. While the virus can kill those that are young and healthy, those cases are unusual. For seniors, especially those with multiple chronic health conditions, the risks are much more serious.  

Even if you were ultra cautious, the risks of going out still existed. In the same way, there was always the risk that you’d pass the virus on, regardless of how cautious you were.

Some caregivers were able to stay mostly at home, minimizing their exposure to the outside world. It was possible to get necessities delivered. Others didn’t have this luxury. Some even worked in essential services.

And, being largely restricted to home came with its own issues. Doing so meant more social isolation and could heighten any conflicts between caregivers and family members.

What Happens If The Caregiver Gets Sick?

And, if the caregiver did contract the coronavirus, what then?

Most recommendations suggested that the caregiver isolated themselves completely. This includes not interacting with people outside the house and also from family members.

Any contact that did occur needed to be very carefully managed to prevent the spread of the virus.

Needless to say, doing so was incredibly difficult for many caregivers. How do you take space for two whole weeks if your care recipient relies on you completely? What if they’re not physically or mentally capable of meeting their own needs?

Ideally, family members would fill the gap, perhaps those in the same household or those that live further away. But, this isn’t always an option. Even if other people were willing to provide support, organizing such support would be difficult, especially if there were lockdown restrictions in place.

The Impacts Of Isolation

Isolation is often a challenge for seniors and caregivers. The coronavirus crisis made the issue much worse, as people were being told to socially isolate.

• For many people, this means that most of their social contacts came just within their household (which creates a whole new raft of problems in a toxic relationship setting).
• Others, including many seniors, were in shared living situations, such as a nursing home or assisted living facility. They were often unable to have external visits, leading to little connection with family members.
• Finally, people who lived on their own ended up cut off from most types of social contact. It’s easy to see how awful this was for mental health. Indeed, some people may have suffered more negative effects from the isolation than from the virus itself.

Being forced away from loved ones had many challenges for caregivers as well. For example, this was one post on an Alzheimer’s forum:

While there are many ways to maintain social contact across distance, these aren’t quite the same as in-person contact. And, as some caregivers mentioned, alternative contact approaches have their own challenges.

For many seniors with dementia, and some without, the crisis was incredibly stressful and confusing. Some were aware that their family members weren’t visiting, but couldn’t remember or understand why.

Seniors Not Taking The Situation Seriously

Then there are cases where seniors were independent enough to make their own decisions, but did not take the social isolating side of this crisis seriously.

In some senses, this isn’t even too surprising.

We hadn’t seen a crisis like the coronavirus before. The threat itself was largely invisible, so we had to rely on stats and the news to get any sense of what was going on – and any source of information will have some bias.

While many people took the advice seriously and followed it to the letter, plenty of people did not. Those who were cynical, paranoid, or rebellious were particularly likely to break the rules.

Some seniors may also want to hang onto the joys of life that they do have, especially if they have already faced multiple health scares.

Family members of seniors reported particular challenges in cases where seniors live on their own.

Understanding the reasons for current rules and recommendations can be difficult too.

For example, social distancing processes are partly in place to protect individuals from contracting the virus, but also to reduce the spread of the virus, as people can spread it without ever knowing that they have the condition.

This is a challenging area, as you cannot make your family member stick to social distancing if they truly don’t want to.

Caregivers in this situation had to develop their own stategies for keeping their family member safe. This could include talking to anyone who may interact with the senior and explain the situation to them.

One commenter mentioned the benefits of writing a letter to explain some aspects of the way that dementia impacts a person’s mind, including how it’s often not possible to make a dementia patient ‘get’ what is going on.

Too Much Time Together

One strange thing about the COVID-19 pandemic is that many people struggled with both too much isolation and too much time together.

Notably, many of us ended up spending a lot of time with those in our home, but little time with anyone else. Regardless of how much you love someone, being stuck in the same house as them day after day can get incredibly frustrating.

Many people found that their nerves became frayed around family members and they were much more sensitive, even to tiny little things. There were extra challenges too, like when people were attempting to work from home or family members had significant health issues.

Caregivers faced their own distinct challenges. Notably, the amount of external support was considerably less. It was also more difficult to get away from home and find respite. That combination could easily make burnout worse, especially when the care recipient was struggling as well.

The Risks of Nursing Homes

Nursing homes, assisted living facilities and similar places are generally considered safe environments, ones that can relieve some of the caregiving burden and help your family member to be healthy.

Yet, this wasn’t true in the height of the pandemic.

Facilities did have safety features in place, including screening visitors (or restricting visitors entirely), testing residents, and separating residents when needed.

Even so, such facilities faced many challenges. Having so many residents and staff in close proximity made it incredibly difficult to actually stop the virus from spreading. This led to many outbreaks in nursing homes.

Then there are situations like this one:

The situation doesn’t seem to be that unusual either (there was even a push to force New York nursing homes to accept coronavirus patients). The practice isn’t as strange as it seems either, as there were serious hospital bed shortages in the height of the coronavirus crisis and much of the required care could be provided at nursing homes and similar facilities.

Potential Solutions to These Challenges

Most official recommendations for responding to the coronavirus didn’t consider the complexities of caregiving or the specific challenges that come with dementia patients or caregiving.

Solutions weren’t always easy either, as staff members at places like hospitals, grocery stores and banks may be resistant to going against rules of their institutions, regardless of your reasons.

Thankfully, there are always some possible approaches. The following sections highlight some potential approaches. Many are still relevant these days and may be in any future crises as well.

• Be Creative With Social Contact
• Be Gentle and Considerate
• Try To Understand Their Perspectives
• Focus On Your Needs Too
• Consider Limiting Exposure to News
• Remember That Your Role Is Important
• Spent Time On Forums, Talk To Caregivers
• Keep Searching, Keep Advocating

Be Creative With Social Contact

Humans need regular contact with other people. This is a natural part of how we’re wired – and we don’t function well if we are too isolated.

In-person connection is the best approach, but it isn’t the only way to connect. People started to find alternatives during the pandemic, including video calling platforms, watch parties on Netflix, and even conversations where people were sitting in their respective driveways.

Then there are stories like how many Italians have been joining together for music from their respective balconies.

Families of seniors in assisted living were sometimes sitting or standing outside windows, talking to residents through the phone. There are many heartwarming stories of this pattern, such as a husband who celebrated his 67th wedding anniversary by standing outside of his wife’s nursing home window with a sign.

Creative social contact isn’t limited to families and neighbors either.

There are many other cases of people reaching out, such as children writing to isolated seniors at nursing homes and the development of Adopt a Grandparent schemes to support seniors that do not have much family.

Be Gentle and Considerate

The pandemic highlighted just how differently people respond to the same situation.

Some people actually found the lockdowns enjoyable, as they had the chance to slow down, reconnect with family, and focus on their hobbies. Others found the situation terrifying and incredibly stressful.

People also cope in different ways. This is true for every type of crisis.

• Some people find that focusing on the positive is helpful. During the pandemic, people with such a mindset may have ignored the news and focused on hobbies and things they enjoyed.
• Others cope by learning as much as they can, perhaps even reading academic articles or comparing reports from different news networks. Such an approach can increase their sense of control, even though what they learn can increase their stress levels.
• Similarly, some people look for physical and emotional intimacy in times of crisis or stress, while others pull away instead.

Differences in coping methods are entirely normal.

The best way to prevent them from being a problem is to focus on accommodating one another as much as possible. Try not to blame or judge someone if their coping method is different than yours. Most of the time there isn’t a ‘right’ or ‘wrong’ approach anyway.

For example, the image below is one question that a forum member asked about their father.

Some seniors responded to the question with irritation, talking about how people their age don’t need to be ‘kept entertained’. Other caregivers mention that they’ve found family members need to decide for themselves what to do.

I particularly like the response to the question below.

Try To Understand Their Perspectives

If you’re acting as a caregiver or are worried about senior family members, try to remember that their understanding of the situation may be very different than your own. Seniors with cognitive impairment often don’t see the world in the same way – while the pressure and stress of a situation like the COVID pandemic could make everything worse.

Some caregivers offered advice about how to explain things so that your family member understands. like in the image below. Just be aware that sometimes no amount of rational explanation will work – people need to make their own minds up.

And, as one forum member pointed out, your family member could completely understand and still not make the decision that you want them to.

Focus On Your Needs Too

Self-care has become a bit of a buzz word for caregiving. Most caregivers know that self-care is important, but doing this in practice is more difficult.

Self-care becomes even more difficult in times of crisis, especially if your house is full of people and it’s difficult to find any time on your own. Yet, during a crisis, it’s even more critical to find ways to meet your needs.

For many caregivers, doing so involves finding some private space and time.

Discussions on forums focus on the importance of physical boundaries, which could include locking your door. While doing so might sound harsh, the ability to have time on your own is essential.

Meeting your own needs like this isn’t selfish. Many caregivers who don’t meet their own needs end up lashing out, which isn’t good for them or for their family members.

I found the balance difficult when I was a caregiver myself, as my help was often essential. But, I did try to make time for myself, while making it very clear that I could be interrupted if the interruption was essential, but not if it wasn’t.

Defining boundaries like this can be difficult in the short term. You’ll probably experience some resistance from your family members too. Still, in the long term, doing so is better for everyone.

Consider Limiting Exposure to News

News channels often get fixated on the negative, which got particularly bad during the pandemic. Now, providing up-to-date information is important, but it was very easy to get overwhelmed by the negative information and stress out about everything going on.

A lot of the information provided wasn’t that helpful for individuals either. Like, there’s little benefit to learning the death rates and spread of COVID-19 throughout the world if you’re just at home in lockdown.

For people that do get stressed, it helps to create limits – like just looking at one news source per day. Or, even only checking the news every few days.

This isn’t just limited to COVID-19 either. The news is still negative even without the pandemic. It’s worth watching regularly if you’re interested in world events and don’t find them too stressful. But, if the information is overwhelming, why look at it?

That being said, some people do take comfort in focusing on the news. This thread on the AgingCare forum (along with the comment below) highlights the pattern and shows why it can sometimes be helpful.

As such, it’s important to pay attention to what works for the individual.

Remember That Your Role Is Important

Official recommendations during the COVID pandemic and any crisis are often broad to make them easy to understand.

The recommendations to isolate are a good example of this, as there were many exceptions. Some caregivers found the general nature of the advice frustrating, especially when their care recipient lived somewhere else.

Caregiving is still considered an essential role, especially in times of crisis. After all, not visiting someone who depends on you could have devastating consequences. No one wants that.

Spend Time On Forums, Talk To Caregivers

The challenges of caregiving and Alzheimer’s patients weren’t talked about much in news stories or official recommendations surrounding COVID, but the conversations were still being had.

Caregiving forums are filled with people talking about their challenges, often looking for advice about what to do next. This is one of the best starting points for advice, as other caregivers know the challenges you’re likely to experience and can offer targeted advice.

Even if you can’t find an answer to your specific questions or situation, you might be able to get some ideas from what other people have to say.

Keep Searching, Keep Advocating

You may find that you need to advocate for yourself and your loved one. Caregivers run into this need at other times too, as many people simply don’t understand what’s involved in being a caregiver.

The topic is a serious one. As the commenter above points out, neighbors cannot simply takeover caregiving roles.

Caregiving is still an essential role, so care workers still work during most types of crises. Caregivers could even hire professional support during the COVID pandemic, although sourcing that help can take time.

One forum participant explained the situation like this:

There are many complicated situations out there, so finding solutions is likely to take time – and patience. For example, a participant on one caregiver forum talked about their family member who contracted COVID-19 at a nursing home, was sent to the hospital, recovered, and was then refused entry back into the home.

Situations like this are complicated and confusing, There aren’t many policies in place to deal with situations like COVID and the variation in responses is extreme. Hopefully, there will be more policies in place if something like this were to happen again.