Ms. Feinberg said that because routine is so crucial for dementia patients, caregivers should provide security and comfort as much as possible. “It’s a time to help the person with dementia have the most normalcy in this most unnormal time,” she said. This could include trying not to watch the television news, playing soothing music and participating in small tasks together, like folding dish towels or winding a ball of yarn. Going for regular walks to get fresh air, even if it’s just in the back yard, can be helpful as well, she said. Staying in the present with something you have control over, Ms. Kallmyer said, “is the best way to get through the day with those you’re with.”
Sherri Snelling, a corporate gerontologist and chief executive of the Caregiving Club, which provides consulting services to employers on caregiver wellness, especially Alzheimer’s caregivers, said it’s important to acknowledge the changes to routine with your loved one and address them. For example, if a caregiver is sick, you could say, “Susie is sick, so Jane is coming to help us out. You’ll really like her.” Or if bingo and arts-and-crafts outings have been canceled, you could say, “Everybody is off, so we’ll do those activities at home today.”
Those who do not live with their loved ones may feel anxious that they are not able to visit them at long-term care facilities now. Ms. Kallmyer suggested using phone calls or video chats, and she urges families to keep in mind that staying away is best for the health of those residents. “It’s hard, but you need to keep them safe,” she said.
Dr. Langa said the priority for caregivers should be to keep themselves healthy and act like emergency medical workers, “because if they get sick, two people are going to be in trouble.” He urges caregivers to get out, take walks by themselves and set up a pool of people who might be able to come in and give them breaks, perhaps while the patient is taking a nap. He acknowledges that this can introduce a risk of exposure, but says the downsides can be significant. Going it alone means “you’re putting yourself at risk of burning out and in danger of getting exhausted,” he said.
Mr. Mehta has kept his morning caregiver and asks her to take her temperature and change clothes when she arrives. Ms. Snelling says getting support from others through virtual support groups can be extremely beneficial. “In this crisis, there’s a fear of the unknown. If we can share those fears with other caregivers and get their insights, that is really key.” She says caregivers can also take time to practice mindfulness as a way to stay calm for their loved ones in a high anxiety environment.
Mr. Mehta said his greatest fear is that he and his wife could be infected simultaneously and that he would not be in the position to take care of her. Though he has a power of attorney and guardianship for his wife, he fears those documents could get lost if he is not with her, should she be taken to the hospital. He worries that if she becomes agitated, his wife, who is unable to communicate and takes no medication, could be medicated with anti-psychotic drugs.
To safeguard against this situation, Dr. Langa recommends developing a contingency plan outlining the logistics and points of contact if the patient or caregiver gets sick. Ms. Kallmyer said advance directives are essential. “Wherever the patient goes, those should go with them,” she said.