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Twelve Weeks and Counting: Dementia Caregiving in the Coronavirus Climate

It’s been twelve weeks since my last post about dementia caregiving and coronavirus issues. I apologize for my lack of posts. Like many of you, I’ve had to quickly adapt to the “new normal.”  Here are some of the ways the pandemic has affected my work….and lessons learned that I’d like to share.

Tele-health Tips and Tricks

I am a nurse practitioner and I see patients in a memory disorders clinic. Because of my university’s social media policy, I’m not allowed to name the place where I work on my private blog. Even though I started writing this blog to help our patients and their family caregivers, but…gotta follow the rules!

Our clinic, like almost every other clinic in the United States, went from zero tele-health to 100% tele-health in dizzying speed. We literally were seeing patients on Monday and finding out that the clinics for Tuesday were going to be converted to tele-health. We were receiving daily emails listing protocols for seeing our patients with dementia and their caregivers, and the protocols were changing daily. We had department meetings a couple of times of week where new changes in billing and billing codes were being rolled out rapidly. I spent the first week attending tele-health trainings and getting up to speed.  Only to have those processes changed because we were finding newer and better ways of providing virtual care.

Our family caregivers were incredible, learning how to download and use the HIPAA-compliant apps on their smartphones, tablets, and computers. My learning curve was steep, too. Here are the lessons I have learned:

  • Prop up the iPhone on my desk so that the family caregiver and patient do not spend the entire visit looking up my nostrils. Or order a smartphone stand.
  • Request at the start of the appointment that paper and pen/pencil be handy, for things like drawing clocks.
  • Call before sending the link to the “virtual examination room” to make sure everyone is ready and that the patient is with the caregiver, either physically or virtually. Why? I cannot bill for a regular visit unless the patient is right there next to the caregiver. In cases where the patient is living in an assisted living facility or nursing home, we can “bring” them into the virtual examination room. We can do this by sending the link to the nursing home employee standing next to the patient with a smart phone or tablet. It takes some logistics, but it can be done!
  • Make sure my coworker, Pippin the cat, is not accidentally locked in the closet during video visits. I have a bad habit of leaving my office closet door open. My file cabinets live there. When I first started video visits, I could see the open closet behind me (once I propped up the iPhone to avoid the nostril view). I would close the closet doors and begin my video visits. What I did not know is that Pippin was going into the closet and curling up; he would wake up in the middle of “clinic” and start meowing hysterically and pushing on the closet door. The first time this happened, I tried to ignore him until the video visit was concluded. Except the family could see the closet door behind me moving like something from a horror movie. Now, I do a closet check before beginning video clinic.

Unique Challenges for Caregivers

Many of my colleagues are performing double-duty, caring for children while performing work activities. Many a Zoom meeting has become much more interesting thanks to kiddos in the background. My favorite to-date is a little girl interrupting a Zoom meeting by telling her father that she and her sisters were becoming mermaids. Hopefully, he intercepted that activity before the bathtub overflowed.

Caregivers of persons with dementia are struggling with changes in routines, too. Some family members have decided to bring their loved one back home rather than face the separation enforced by facilities. Other family caregivers have lost access to day cares and respite programs. Many of the respite programs are providing sing-a-longs and other interactive activities via Facebook Live and Zoom. Kudos to these programs for creativity! Some programs are also sending in “buddies” to stop by and socialize while maintaining social distance. At the same time, some caregivers have opted to avoid paid caregivers out of fear of bringing coronavirus into the home. There are no right or wrong approaches, only approaches that are right for individual situations.

Unusual Times, Unusual Ideas

One of my friends reported that her mother-in-law with dementia was writing all over the walls in her room at an assisted living facility. Because of the coronavirus, she is being kept in her room for large portions of the day. I asked if her mother-in-law had been a teacher. Turns out, she had…for over 30 years. I suggested working with the facility to install chalkboard-like contact paper.  My friend’s mother-in-law was likely reliving a time in her life when she was teaching her students. And the chalkboard contact paper was easier to clean than the walls of the apartment!

It is the activity, not the successful completion of the activity, that is important! The Alzheimer’s Association has some great ideas on their website. Some family caregivers have developed their own approaches:

  • taking daily “trips” to large outdoor nurseries and walking among the flowers and plants. Not quite a botanical garden, but close enough!
  • taking more drives for a change in scenery.
  • putting together their own daily work-out routine.
  • having virtual “morning coffee” hours with fellow support-group members
  • developing personal sacred/religious practices to substitute for weekly services…especially if the person living with dementia cannot follow the streamed service.
  • enlisting a neighbor, friend, or relative (or combination of all 3) as a daily walking buddy (gives the caregiver a small break).
  • creating an in-home “grocery store” where the children assist as workers and cashiers.
  • setting up a work-space complete with paper, pens, highlighter, adding machine, and other items that the person living with dementia would have used in their occupation.
  • maintaining a schedule that involves consistent times for getting up, eating meals, and helping with household chores. We use schedules to create memories and abilities in children; we use schedules to maintain as many memories as possible with people living with dementia.

More to Come…

I look forward to sharing more with my readers! Meanwhile, please send me questions or comments!




Categories: Alzheimer's Disease Care Partners Caregiving COVID-19 Dementia

Dr. Rita Jablonski

Rita Jablonski, PhD, CRNP, FAAN, FGSA is a nurse practitioner, researcher, tenured professor, and former family caregiver. Her research and practice involve all aspects of dementia management; she is best known for non-drug strategies to address dementia-related behaviors.

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