Dealing with Dementia During the Pandemic

The pandemic has presented care partners with a whole new batch of concerns.

For those with loved ones in a care facility, the biggest concern is being unable to visit them or be with them during times of stress such as illness, surgery or final days. You may understand the reason for the restrictions. You may know that the staff is doing their best to fill in the gaps. But this doesn’t stop the worry and guilt about deserting a loved one who can’t even understand why. There is no easy or perfect answer to this. What answer there is will usually require working with the staff to find ways to connect, ways like window visits, Zoom visits, phone visits and perhaps even outdoor visits—from a social distance.

Then, once you’ve done all you can to maintain contact, you need to let go of the worry and guilt. Their job was to motivate you to act—and you’ve done that. Worry and guilt that hang around after their job is done are like rotten fish, obnoxious and unhealthy.

Those who are caring for their loved ones at home have questions like these:

• How do I take care of myself when normal respite options are limited or unavailable?
• How do I keep myself and my loved one safe?
• How do I help my loved one, who has a dementia-related fear of change, deal with all the necessary changes?
• How do I deal with the behavioral changes that often follow these changes?

There are no easy answers to any of these questions. And no single answer for any of them either. As with all dementia-related caregiving, there are many general answers but each must be customized to your own situation.

How do I take care of myself when normal respite options are limited or unavailable? As care partners, we tend to be much more focused on how to care for your loved ones and this question often gets asked last, if at all. But as care partner advocates, Jim and I know that it is often the first question you should address. If you don’t take of yourself, you won’t have the energy, stamina or even the health to you need for the demanding job of caring for your loved one. That’s why next week's blog will be about this very subject.

How do I keep myself and my loved one safe from the virus? Experts tell us that the safest thing to do is to stay home. Use online ordering, deliveries and curbside pickups instead of going shopping or eating out. You can find many more thorough guidelines online, but the basics are that when you do go out:

• Wear a mask—to protect others. Yes, I know, you are sure you aren’t contagious. However, since there may not be symptoms, you can’t be sure. Wear the mask!
• Practice social distancing—to protect yourself. Keep at least 6 feet apart from others not in your family group. That’s the distance the virus appears to be able to travel from one person to another.
• Get tested. Experts say the more people who get tested, the better they can watch and control the spread of the virus.

How do I help my loved one deal with the many changes? Since your loved one may not be able to accept wearing masks, etc., you may find that the best bet is simply to stay home, or to go out by yourself when you need to. Other changes will be difficult  explain too, like why no one comes to visit anymore. In fact, explanations are seldom helpful when reason isn’t an option. Try empathizing and sympathizing instead. If you find a way to agree, do so. And use patience, it is more soothing. Your friend here is time. As the new way of life becomes the norm, it will be less difficult for your loved one as well.

How do I deal with my loved one's increased dementia-related behaviors? Sadly, you may be able to use empathy, sympathy and patience to relieve the pressure some, but your loved one will likely still be confused, uncomfortable and probably scared. These negative feelings lead to an increase of those unwelcome dementia-related behaviors.

Our book, Responsive Dementia Care, has many very practical suggestions for dealing with difficult behaviors like obsession, delusions and irrational anger. Do consider reading it. Past blogs have also already addressed various aspects of this issue too.

A series of blogs reviewing our take on behavior management  will start two weeks from now. The LEAD Principles are a guide for helping you lead your loved one away from behavior-causing themes towards those that calm and comfort. Following blogs will be about using these principles to manage obsessions, delusions and angry accusations, the three Jim has found discussed most in recent care partner groups. However, the Principles can be used with a variety of other behaviors as well.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.