Solutions for Long-Distance and End-of-Life Dementia Care

As I’m sure you are aware, Rosalynn Carter died recently, after a short two days in hospice. Her husband, former President Jimmy Carter, has been in hospice for nine months. Hospice is like cutting a suture – you either cut it too short or too long, but never just right!

To qualify for the “hospice benefit,” a patient typically has a life expectancy of six months or less. Hospice care focuses on providing symptom relief, as opposed to aspiring to a cure, and supplies and services not provided under regular insurance may be covered by the hospice benefit. It is well-established that there is cost savings for hospice, even if patients tend to live longer, because expensive yet futile curative treatments are forsaken. It is also well-recognized that patients and families have better quality of life, less pain, less emotional distress, and less grief and guilt. An article on Vox.com titled “Many Americans with dementia can’t get the hospice care they need” highlights that conditions with more predictable courses, like metastatic cancer that has failed chemo-, radiation, and immuno-therapy, are easier to assign in the temporal sweet spot in a hospice setting. The long goodbye of dementia does not lend itself to foreseeing the inevitable end, and families experience terrible strain and suffering caring for a family member who no longer remotely resembles

their loved one. The article suggests that a model in which patients and families are offered hospice palliation at the point at which the disease becomes exceedingly burdensome would be preferable to the current state.

When I moved my father into a memory care unit at the end of April, we elected to use a terrific hospice provider called Miracle City Hospice. His nurse, Tara, and his aides keep me in the loop. The hospice company calls me weekly to see if I have any concerns, questions, or needs. They take care of his medical needs, like providing wound care and incontinence supplies; his hygiene needs, like shaving and showering; and his human needs, like being spoken to kindly and scratching his itchy back.

Periodically, the hospice team reassesses the patient and determines whether they think the patient still meets the criteria, including the limited life expectancy. They recertify the patient, and the hospice benefit continues (explaining why Jimmy Carter has survived nine months on hospice so far).

I discovered a huge difference between hospice providers recently. I visited my father in his facility at one point and found him coughing and gasping for air. The hospice nurse informed me that they were going to put him on daily visits and that if the “time of transition” became imminent, they would invoke bedside protocol (BSP). I had no idea what that signified, and she explained that someone would remain at the bedside 24/7 to help ease the patient’s passing. This is not universally offered, so if you are exploring hospice for you or a loved one, try to find one that does. It gives me enormous peace of mind knowing that when the time comes, they will be there – especially if I can’t.

One of the things the hospice folks have learned from me is the existence of an app called RecallCue. (As a disclaimer, I do not have professional affiliations with any of the companies I am mentioning today.) RecallCue is an aid for memory loss and dementia. There is a modest fee, which I happily pay.

A dedicated iPad aimed at the patient is controlled by the app on your device. The baseline display shows the day, the date and time, the time of day (morning, afternoon, etc.), and the weather. The user can post messages, pictures, and/or music and can set the duration of display (e.g., for one hour, all day, pinned indefinitely). This is what the display looks like with a pinned message (it takes up the entire iPad screen):

Perhaps the most useful feature is the “Check In” video call. It is like FaceTime, without the receiver having to actively accept the call. The app prompts you to be mindful of your loved ones’ privacy, but if you accept the warning, you pop up on the iPad and can converse. Depending on your local regulations and customs, you may need to sign paperwork and post a notice that the resident is under 24/7 video surveillance. The iPad is stationary, and you only visualize one area of the room, however.

If you want a device that can be redirected, you might want to check out Blink Mini Indoor Cameras. Although the residents can’t see you, you can see them and speak to them through the microphone. They look like tiny robots. There is a blue light that indicates when the camera is engaged. We have both setups in my dad’s apartment.

If you are caught in that sandwich generation, I hope you found this article useful. I feel you. I hope you find devices and products to give you peace of mind.

If you have any questions, please contact me at icd10md@outlook.com.