What Do You Do When Telehealth Forgets About Dementia?

I’m a big fan of telehealth. My physically disabled mother can access care during snowstorms and on days when getting out of bed is too difficult. It makes it possible for family members and caregivers to join her appointments, which is important for care continuity and patient advocacy. And we found our guiding light: a psychiatric nurse who only uses telehealth with her patients and lives in another county. 

But last week, telehealth failed us. Completely. Despite all the preparation. After waiting more than six months for a follow-up appointment after an ER visit, what should have been a straightforward consultation turned into a stressful farce for everyone involved—patient, caregiver, and doctor, as well as a nurse and aide not pictured. 

Two days ahead of the call, I checked Mom's health care portal to confirm the details of her visit. I found a note saying a link would be sent via email or text message to the patient.

My mother has not checked her email, without someone sitting next to her, for at least two years. She technically has a mobile phone, but it’s mostly switched off. Since moving into a long-term care home recently, she primarily uses a landline. I’m listed as the primary medical contact for her (my brother is secondary) as I make her appointments.

The link was scheduled to be sent to my mobile number, as I am listed as the primary contact.  Since I cannot be physically with her on that day, we would need a group call, and we would each need to be able to join. 

Mom confirmed that her mobile phone was plugged in and ready to go. When I called the clinic to make arrangements, I confirmed that they could send out the links up to 24 hours in advance. Great!  This would give me time to provide Mom with virtual tech support and remind her how to unlock her phone and open her messages. Receiving a link is one part, but retrieving it is a different challenge.

I coached her through entering her mobile phone password and navigating the messaging app on her phone. But here’s the reality of dementia: practicing once doesn’t mean Mom can repeat the process later.  Would she be able to do this tomorrow for the real call? I doubted it. Would she need backup? Very likely.

I immediately emailed the very reliable nurse on Mom's floor, who confirmed the appointment was in her calendar and that backup assistance would be available if we required it. Amazing.

On the day of the appointment, Mom could not access the link with her mobile. I told Mom that I would indeed call the nurse’s station to request some help. An aide stayed on the phone with me and walked into Mom's room to help her with her mobile.

Understandably, she required the password to open the phone, which I gave her. So much for secure access. When systems are not designed for cognitive impairment, caregivers are forced to choose between access and privacy. After a six-month ’wait to see this doctor, we chose access.

After neither the aide nor my mother could find the clinic’s link in the messages app, I gave her a second password to check Mom's email. No luck there either. Where did this leave us three minutes before the appointment was supposed to start? Since my mother and I both have iPhones, I improvised and called her using FaceTime video and held up my phone to my laptop camera so the doctor could see her.

I’m Sarah, the caregiver in this AI-generated photo depiction. While Sarah’s phone features a woman’s face centered in the camera, this did not happen. We hadn’t rehearsed looking into the camera. The doctor mostly saw the wall above my mother’s bed, the bridge of her nose, and her right eye. Keeping her in the frame required constant prompting. It was exhausting for her and limiting for the admirably patient and professional doctor, who was trying to do a full assessment.

A person living with dementia often struggles with recalling memories. A few hours before this call with the doctor, I had had a call with his assistant to confirm my mom’s diagnosis of major cognitive disorder. And yet, the search for self-reporting data continued.

“Was your chest pain coming from your back or the front of your chest when you were at the ER six months ago? Do you remember?” 


“No,” Mom sheepishly responded. “I don’t remember.” She stared back with a blank face.


“It’s not in the notes,”  the doctor replied.


I added, “Sorry, but unfortunately, I don’t have any notes either, as I was not with her at the hospital.”

In the end, the doctor requested additional ultrasound scans to look for scarring and evidence of what might have happened.

This HIPAA-compliant telehealth visit assumed that a person living with dementia could:

In other words, it assumes the patient is cognitively fit. This experience gets a digital inclusion grade of a solid D. (Kind humans saved it from getting an F.)

Telehealth can be a powerful tool. But for families navigating dementia, it only works when it’s designed—and used—with cognitive realities in mind. 



My mother’s memory clinic—specialized in cognitive impairment—gets an A+. It works because it’s designed for people living with dementia and their caregivers.
They use a different and simpler system (Doxy.me):

Easy peasy.


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