I recall visiting my mother in the hospital years ago after she had been admitted for a common urinary tract infection, and she was in tears because she was so hungry. Her breakfast had been delivered at 8 a.m. and still sat right in front of her, untouched, three hours later. The care team didn’t realize she couldn’t feed herself or eat certain food, a disorder that is common among those living with dementia. She was in agony, and so was I as I witnessed her pain.

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. To protect patients and staff, hospitals have restricted visits or, in some cases, stopped visitation altogether. When you can’t see your loved one face-to-face, how do you advocate for them when they are in the hospital?

If your parent or loved one can’t communicate their desires or needs, you are their voice. You can communicate their vulnerabilities, share your observations about their behavior, ask important questions, and convey critical information to the medical professionals. Trust your instincts and be tenacious that their needs are being met.

In the United States, one in three caregivers take care of a parent or loved one with Alzheimer’s or another form of dementia. Being in the hospital can cause behavioral issues, fear, anxiety, agitation, and more-than-normal confusion in older adults with cognitive impairment.  Here are eight ways to advocate for your elderly loved one with dementia during their next hospital stay.

1. One point of contact. Within your family, designate one person to communicate with the hospital. Hospitals and staff are taxed during the pandemic. Having a family spokesperson will streamline communication and prevent mixed messages. 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.
2. 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. Include your concerns. Do they have difficulty chewing or swallowing? Can they feed themselves, or do they need help? Are they non-verbal? Can they follow complicated directions? Your insight is invaluable for their care team to provide the best care to your loved one. You may also consider providing a visible queue or badge for them to wear that alerts care teams of their unique needs.
3. Communicate their baseline. Help the hospital staff understand your loved one’s “baseline.” Prior to entering the hospital, what level were they functioning at? Communicating their functionality will help the care team differentiate between dementia, acute confusion, delirium, or something more serious.
4. Making the rounds. Ask to take part in doctor 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.
5. The essentials. Make sure your loved one has necessities, like their hearing aid. With care staff wearing 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
6. 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.
7. Smartphone or tablet. If you can’t be by their bedside, communication will be essential. 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 don’t 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.
8. Clear masks. During the pandemic, the use of masks and face shields means that dementia patients cant clearly see their nurse, doctor, or technician speak or smile. Not seeing these facial cues can make basic communication even more difficult. Many hospitals are using transparent masks, where the mouth is visible behind clear plastic. Ask if your loved one’s hospital has these.

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.

Dwayne Clark, who wrote this article, is chief executive officer of Aegis Living, which has senior-living communities in King County.

A MONTH OF ALZHEIMER’S AWARENESS

June is Alzheimer’s and Brain Awareness Month. The Alzheimer’s Association notes that the more people know about Alzheimer’s, the more action can be taken to combat it through research of the disease and support of people affected by it. Donations to support that effort can be made at alz.org. And for information about efforts to make Pierce County a dementia-friendly place, contact the Dementia Services program of Lutheran Community Services Northwest at lcsnw.org, dementiaservices@lcsnw.org, and 253-272-8433.