Family members caring for a parent or spouse with dementia are fighting new battles during the coronavirus pandemic as they try to enforce rules of hygiene and social distancing with loved ones who can’t always grasp how high the stakes are.

“The idea of telling someone with Alzheimer's disease that they need to quarantine in their room and stay in there is almost impossible,” said Nicole McGurin, the head of family services at the Massachusetts-New Hampshire chapter of the Alzheimer’s Association.

That organization estimates there are more than 300,000 people in Massachusetts caring for a family member at home with Alzheimer’s or another form of dementia.

Terri Mulliken is one of them. She’s the primary caregiver for her wife, Kelly, who was diagnosed a year ago with early-onset dementia.

Their old routines in Andover before the pandemic are now mostly gone: fewer walks and no more grocery shopping trips together or visits with friends. The fear of getting infected has replaced all that, said Mulliken.

“The biggest thing is the hygiene,” she said. “One time she felt she had something in her mouth, so with the dirty gloves on, she grabbed whatever was in her mouth. I'm like, ‘Kelly, no, no, no, don't do that.’ She just doesn't get it.”

Mulliken is worried that Kelly could get COVID-19 and that it could be what ends her life — at just 59. Mulliken is also worried about her own health and what would happen if she were the one to be infected.

Terri Mulliken (l) and her wife Kelly (r) hold hands while posing for a photo outside of their home in Andover, Mass., on May 10, 2020. Mulliken is the primary caregiver for her wife, who was diagnosed a year ago with early-onset dementia.
Meredith Nierman WGBH News

“What would happen to Kelly, who would take care of her? We have no family in this state whatsoever,” she said.

A monthly support group for caregivers is now operating online, and Mulliken called it a lifeline, a connection to people who understand the pressure and anxiety she’s facing.

Elder advocates said the new burdens on caregivers from coronavirus are compounded by dwindling sources of respite and help. There’s been a steep decline in the demand for home health aides as caregivers are fearful of letting outsiders into their homes.

There’s also no back-up or relief from local senior centers and adult daycare programs. Most have been shut down since March.

“That's a huge change in the routine for their loved one, but also for the break that they used to get from their caregiving,” said McGurin, adding that the pandemic has upended carefully orchestrated strategies for both caregivers and their family members.

People with dementia need dependable routines to reduce their confusion, anxiety and agitation.

“The way they kept that routine was maybe going to Dunkin' Donuts once a day or going to the mall to walk,” McGurin said. “With social distancing, those kinds of options for routine and for engagement are very limited.”

And they are getting less exercise, which leads to greater health risks, especially for elders who are already losing muscle mass, said Dr. Sarah McGee, who teaches geriatric medicine at UMass Medical School in Worcester. People with dementia have a higher risk of risk of fall injuries like hip fractures, and “any loss of strength is going to increase their risk of falling,” said McGee.

Looking ahead, McGee said caregivers are going to be in a bind as the needs of their family members with Alzheimer’s and dementia increase.

Caregivers often decide to move a parent or spouse into a nursing facility when incontinence or immobility issues become unmanageable at home.

But long-term care facilities in the state have been hotbeds for COVID-19 infections among both residents and staff and have seen more than 2,500 deaths since March. Dementia patients in nursing facilities are also at a high risk for infection for the same reasons that cause caregivers like Mulliken so much stress: They wander and they don’t understand all the new rules of the pandemic.

“People are going to be very reluctant to think about a nursing facility for their loved one during this crisis and for some time,” McGee said.