Despite every effort by caregivers to safeguard their loved ones with dementia during the COVID-19 outbreak, the number of cases among these patients grows every day. At press time, the number of deaths in nursing homes was more than 10,000 (including residents and staff), according to data from 23 states collected by the Kaiser Family Foundation. "This is a very tough situation, and I understand what families are going through," says Beau M. Ances, MD, PhD, FAAN, endowed professor of neurology at Washington University in St. Louis, whose close relative had Alzheimer's and died from COVID-19 in a nursing home.
With restricted access to facilities, relatives rely on staff for updates on how residents are doing. Dr. Ances recommends calling every day and asking questions about your loved one's blood pressure, temperature, and physical or behavioral changes, if any. "Ask about the facility's protocols if someone develops COVID-19," says Beth Kallmyer, MSW, vice president of care and support at the Alzheimer's Association in New York.
If you learn about cases at the facility, ask how individuals are being quarantined to prevent spread of the virus. Families who choose to take their relative out of a facility need to consider whether they're prepared to quarantine their loved one for 14 days at home and how long they will be able to provide care.
Video chats have become extremely important for COVID-19 patients. "Staff can often assist with video communication, which allows families to see their loved one firsthand and notice any changes in their condition," says Allison Reiss, MD, associate professor at NYU Long Island School of Medicine and board member at the Alzheimer's Foundation of America.
If a family member is admitted to a hospital, "find out the policies for visiting and be emotionally ready for not being with your loved ones in their final hours," says Dr. Ances. Let the hospital staff know important details about your relative, including his or her physical and mental capabilities; personal, cultural, and religious practices; and eating and drinking patterns. "Talk to the doctors to make sure your loved one's other conditions are being well managed while they fight off the infection," says Dr. Reiss, who encourages families to remain hopeful even after a loved one tests positive. "We're hearing some stories of older people recovering and leaving the hospital. We know the medical community is doing everything they can to care for and save patients."
The Alzheimer's Foundation of America recommends creating a "go kit" that includes documents like health care proxy, power of attorney, and medical directives to ensure patients' wishes are understood and honored when they are no longer able to make health care decisions or speak for themselves. Everybody in the family should have a copy of this kit, and it should be provided to residential facilities and hospitals.