In the Hospital with Dementia: 8 Steps to Advocate for Your Loved One

by Dwayne Clark, Founder and CEO of Aegis Living

Having your elderly loved one or parent admitted to the hospital is stressful under normal conditions. During a pandemic, this situation can be even more tense for families—especially if your loved one has dementia. So when you cannot see your loved one face-to-face, how do you advocate for them when they are in the hospital?

One Point of Contact. Within your family, designate one point of contact to communicate with the hospital. Request that your contact name and phone number are written on the whiteboard in the patient’s room and/or at the nurse’s station.

Provide Documentation. Write down key points to help the care team get to know your loved one quickly. Provide documentation that includes their likes and dislikes, typical daily routine, and life history. Don’t forget to include your concerns. Do they have difficulty chewing or swallowing? Can they feed themselves, or do they need help? Are they nonverbal? Your insight is invaluable for their care team to provide the best care to your loved one.

Communicate Their Baseline. Help the hospital staff understand your loved one’s “baseline. Communicating their functionality will help the care team differentiate between dementia, acute confusion, delirium, or something more serious.

Making the Rounds. Ask to take part in doctor’s visits virtually or by phone, so you stay informed. Take notes during the visit to help you remember what the doctor said and to share with other family members.

The Essentials. Make sure your loved one has necessities like their hearing aid. With care staff wearing both a mask and face shield, it can sometimes be harder for the patient to hear. Also, don’t forget their eyeglasses, reading glasses, or dentures, so they feel comfortable.

Familiar Items. In a new or unfamiliar situation, personal items may help them feel more at home. A favorite pillow, blanket, or comfy robe may help them be more relaxed.

Smartphone or Tablet for Patient. Drop off a smartphone loaded with family phone numbers or a tablet for your loved one. Include an extra-long power cord and place the device in a brightly colored case to avoid having it forgotten on a dinner tray or lost. If you do not have an extra device, inquire if there are electronics for your loved one to borrow and if they can have assistance to make a call or connect virtually.

Clear Masks. During the pandemic, the use of both masks and face shields means that someone living with dementia cannot clearly see their nurse or doctor speak or smile. Many hospitals are now using transparent masks, where the mouth is visible behind clear plastic. Ask if your loved one’s hospital has these available.

A loved one in the hospital can be stressful, but don’t forget to take care of yourself. Remember that they are surrounded by professionals who have trained for years and have dedicated their lives to caring for the sick. And they have you, their informed patient care advocate.

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