Everyday challenges are part of the bargain when you care for someone with dementia. Throw in a pandemic on top of that and you may have to manage more than you ever thought possible.
The world is full of what ifs right now. Still, there are lots of things you can control and prepare for if you care for a loved one with dementia at home or in a facility.
To Explain or Not to Explain
It may be hard for anyone to understand the ways that SARS-CoV-2 has remade our lives. It's even harder for those with memory loss and issues solving problems.
If your loved one is in the early stages of dementia, it might be helpful to talk about the new coronavirus, especially if they may be hearing the news elsewhere.
Talk as simply as you can and reassure them if they seem anxious. For example, you can explain that they need to wash their hands more often or stay inside to be safe. Tell them we're together and that it'll be OK.
Get them vaccinated to protect them, especially if they are having difficulty grasping how to avoid getting infected.
Top health experts recommend getting a vaccine made with mRNA (like the ones from Pfizer and Moderna) rather than the Novavx or the J&J vaccine, which is made differently. If the mRNA vaccines aren't available in your area, consider having your loved one get one of the other vaccines. Receiving any COVID-19 vaccine is better than being unvaccinated, experts say.
Once they're fully vaccinated, keep up to date with their COVID-19 booster vaccines when they are eligible for them.
If your loved one's dementia is more advanced, there may be fewer benefits to a discussion. Consider first asking yourself:
- What can they understand?
- How will they respond?
- Will explaining cause more anxiety than comfort?
Even if your loved one doesn't understand what's happening, they can see what you're doing. Show them how you wash your hands or how you get food and medication delivered.
Keep Up Your Routine
Changes in routines can be especially unsettling for someone who has Alzheimer's or other forms of memory loss. Carrying on as you normally do helps add structure and safety to the day for both of you.
Do your best to stick to regular schedules for meals, bedtime, and other activities. Be consistent and patient if you must adopt new routines.
The CDC recommends working some safety measures into your routine and your loved one's. Everyone should wear face masks when around other people unless they are vaccinated, have trouble breathing, or can't take the mask off without help. Wash hands often, and keep common surfaces clean and disinfected.
A person with advanced dementia may have trouble following guidelines on preventing the spread of the virus. Do as much as you can to help them.
Work Around Roadblocks
When your city or region is experiencing high transmission rates, walks around the block or trips to the hair salon may not be possible. That may be upsetting for your loved one. If they're in a facility and visits aren't possible, ask if you could arrange a video call by phone or on the computer.
Make the most of the moments you can share. Fold laundry or set the table together. Go through old family photos or listen to their favorite music. It's more about the way you relate to their senses than having a conversation.
Tips With Visiting Caretakers
It's possible for anyone coming into your home to carry the new coronavirus. If you use an agency, ask about their pandemic protocols:
- What are you doing to ensure your staff is healthy and safe?
- Are they required to be vaccinated?
- Is it possible to assign the same caregivers to help ensure familiarity?
- How much notice can we expect before staffing changes or cancellations?
Check the temperature of any visiting caretaker. Confirm that they understand how to wear a face mask, wash hands, and disinfect the right way. Also ask:
- Have you been sick?
- Have you been around someone who tested positive for coronavirus?
- Are you vaccinated?
Plan for Possible Illness
People with dementia may be at a higher risk for severe coronavirus. And nursing homes and other long-term care facilities have been hotspots of outbreaks from COVID-19, the illness caused by the coronavirus.
Watch for changes in behavior or in dementia symptoms that can be signs of more stress, more anxiety, or COVID-19 infection. These could include:
- More agitation or confusion
- Sudden sadness
- Coughing or trouble breathing
- Fever
- Chills or shaking
- Muscle pain
- Headache
- Sore throat
- Loss of taste or smell
So it's smart to think ahead if you or your loved one gets sick. Preparations now may save you from having to scramble during a crisis.
Pack a separate travel bag for you and your loved one with everything you'd need for a hospital stay.
Gather these documents and give copies to people you trust:
- Advance directives, such as Provider Orders for Life-Sustaining Treatment, that spell out what treatments to give and who has the power to make medical decisions
- Names and numbers of all doctors
- List of allergies, things and activities that bring comfort, and other personal likes and dislikes
- Names and phone numbers of at least three family members or close friends
- Your will and your loved one's will
Get the contact information for the social worker or advocate who can help coordinate with doctors if your loved one is in the hospital.
Take Care of Yourself
Living with or caring for someone with dementia sometimes can be a lonely job. And the coronavirus may leave you feeling more isolated than before.
But you can't do this alone. Reach out -- for a helping hand, for connection, or for a break. Stay in touch with others by phone or online.
Talking with someone who understands what you're going through can give you both strength and strategies.