Jul 22, 2020

At-Home Dementia Care During COVID-19

Caring for a loved-one with dementia can feel a lot like riding a rollercoaster. The journey is one full of up’s and down’s and almost never predictable. One moment you’re at the top of the coaster -- You feel elation and joy as a loved-one remembers the words to an old song or the name of a place previously forgotten. But, suddenly, the next day a familiar name is forgotten, another item is misplaced – and it can feel like you’re rushing towards the bottom of the hill, filled to the brim with fear.

Add in a global pandemic and it can feel like the rollercoaster sped up 100MPH without any warning.

The result for caregivers of those with dementia is often a feeling of exhaustion. It is stressful and challenging to keep calm and provide care during the time of COVID-19. We’re here to cover some of the top concerns we’ve heard from caregivers of individuals with dementia and share our best science-based tips and tricks to help.

You worry you’ll give them COVID-19 by accident.

While the risk of passing on COVID-19 to the person you care for is a necessary concern, it should not be paralyzing. If you’re taking precautions, you are mitigating risk of exposure to the virus. Some of the top pre-cautions you should always follow include:

  1. Practice good hygiene by washing your hands for at least 20 seconds, especially after coughing, sneezing, using the restroom, or touching any frequently used item or surface.
  2. Disinfect frequently used items and surfaces daily.
  3. Enact an alternative caregiving plan immediately if you start to feel sick.
  4. If/when bringing groceries to loved one, wash all fruits and vegetables. Remove cardboard boxes of packages and put the insides in the pantry (i.e.; disposing of cereal boxes and keeping the cereal bag in the cupboard).
  5. Adhere to social distancing rules when you are not caregiving. Avoid crowded places and always maintain 6 feet distance or more from others. Keeping yourself healthy is key to continue providing safe care.

You’re not sure how to care for them if you get COVID-19.

Ensure you have a plan in place for alternate care if you were to get sick. Make a list of other family members or close friends who would be able and willing to take over your caregiving duties. Call these individuals and get a clear sense of what they are able to commit should you need to enable back-up care.

If you are not able to rely on family or friends for back-up care, consider 3rd party resources as another outlet. Care.com is a good resource that allows users to pick and schedule qualified in-home caregivers. They offer an array of services that enable families to find, manage and pay for care – including finding providers who specialize in senior care and dementia care.

You worry they’ll get COVID-19 from touching something.

Encourage those in your care to wash hands and avoid touching their face as much as you can while you are there in-person. For when you cannot be there, the Alzheimer’s Association recommends written reminders for support. Here are a few examples:

  • A sticky note on the bathroom mirror reminding to wash hands for 20 seconds
  • A note in the silverware drawer to wash hands before eating
  • A card to keep in their pocket that gives them a friendly reminder to practice good hygiene

You worry disruptions to their routine will make the dementia worse.

Individuals suffering from memory loss rely on routine to function at their best.

Try to keep as much “normalcy” as possible by maintaining routines. For any routines that got disrupted due to COVID-19, try to recreate them to the best of your ability. For example, if your loved one went to a day care center every Wednesday and played games at the center, find out what games where played and try to recreate those same games at home.

Do you normally eat dinner at 5 o’clock? Continue eating dinner at 5 o’clock. Try to stick to the same time frames, ensuring they maintain as much of a standardized daily routine as possible.

For some with dementia, especially those who may be non-verbal, they may rely on touch to communicate. If you’re used to giving them a squeeze on the arm every morning, try to maintain that routine but doing it safely – if they will tolerate gloves, wear gloves.

You aren’t sure how to explain the pandemic when they ask.

In certain instances, you may be faced with the choice of explaining the current pandemic. Perhaps the person you are caring for asks why you are wearing gloves or maintaining distance. If you choose to explain COVID-19, be sure to explain it in relatable terms in a calm and reassuring manner. For example, a statement like the following may be appropriate:
“Right now, there is a pretty bad bug going around and I’m trying to make sure you and I stay healthy. I’m wearing these gloves to practice good hygiene and be extra safe. There is no need to worry.”

For those with severe dementia, it may be best to steer clear of the topic entirely, so unnecessary panic and distress are avoided.

The “right” way to explain the pandemic to a person with dementia varies greatly by individual. Use your gut to make the call on how to share (or not share) the virus responsibly.

You feel overwhelmed with stress.

It’s okay to cry. It’s okay to feel down. It’s okay to struggle. You are human and you’re doing the best you can. Not every day will be perfect.

However, if you constantly worry about the virus, you will wear yourself out. When you wear yourself out, You are harming yourself and you’re also compromising your ability to be fully present as a caregiver.

You cannot control the virus. You shouldn’t spend a long time worrying about something out of your control. Instead, focus on what you CAN control, including:

  • Your positive attitude
  • Following CDC guidelines
  • Finding fun things to do at home
  • The attitude you bring while caregiving
  • Turning off the news
  • Limiting time on social media
  • Showing yourself grace
  • Taking care of yourself

You’ve Got This

This is a rollercoaster you probably never wanted to board and right now it feels like it’s moving faster than it ever should.

Remember to focus on what you can control - establishing a routine, setting hygiene reminders, and creating an alternative care plan in case you need it.

While the ride is fast and ever-changing, your ability to adapt and tackle new challenges is even greater.

Additional helpful resources on this topic: