San Jose families carry the weight of dementia during coronavirus shutdown

Celso Castaniada often wakes up at 3 a.m. — the night has become the day. By 3:30 p.m., Castaniada becomes more confused, a symptom of dementia known as sundowning.

His internal clock has gone awry since the coronavirus shutdown upended Castaniada’s routine of going to adult day care center Hearts and Minds Activity Center in San Jose, which closed on March 17. There, the 94-year-old retired custodian for Santa Clara County used to listen to live musical performances, and talk to the staff, volunteers and others with dementia. Now his family is doing everything they can to fill in the gaps.

There are good and bad days, but it’s just not the same as sending Castaniada to Hearts and Minds, his son Henry Castaniada said.

When Henry takes care of his dad every Tuesday, they walk outdoors. They play card games and listen to his favorite music. To ease his sundowning, Castaniada’s family and his caregiver ensure that his home is well lit and his doctor has changed the dosage of his medications.

“When I leave dad on Tuesday, I go home and as happy as I’m with my dad, there’s an emptiness because you see your dad deteriorating,” Henry said.

Isolation turns to agitation

Castaniada’s deteriorating condition — and his caregiver and family’s tireless care — underscores the challenges confronting those with dementia, their loved ones, caregivers and even highly-trained physicians battling the memory-robbing syndrome amid the COVID-19 pandemic.

Mehrdad Ayati, a geriatrician and professor of medicine at Stanford University, recommends his dementia patients attend a day care center to manage their symptoms by getting physical and social contact. That option is now unfeasible during the coronavirus shutdown.

“They are more agitated,” Ayati said of such patients. “Some of them are more combative … this makes me worried because as physicians our last choices will be to medicate them more, which we hate because we know psychotropic medication actually has more side effects rather than benefits for them.”

He also worries about the burden on family caregivers as they look after loved ones with dementia day and night while sheltering-at-home.

A ‘labor of love’

Debra Law used to take her mother, who has dementia, to Live Oak Adult Day Services in Willow Glen five days a week. With the adult day care center and its three other sites in the county shuttered, she looks after her 84-year-old mother, Lureta Johnson, at home in San Jose.

Law often reminds and helps her mother — a retired nurse — to wash her hands.

“It’s gotta be hard having her brain betray her,” Law said.

Instead of bringing in their housekeeper during the pandemic, she cleans her mother’s room, bathroom and laundry while writing a dissertation for her doctor of philosophy degree and holding virtual classes for her nursing students.

“I had a moment last week — it was on Thursday — when the weight of all the responsibilities that I juggle just felt overwhelming … ” Law said. “I got a phone call and it was from Live Oak. They were doing a wellness check for the caregivers. It couldn’t have been more on time.”

Live Oak along with Hearts and Minds, have launched virtual activities for their participants five days a week. While her mother plays word games, listens to musical performances and does chair exercises during Live Oak’s virtual conferences, Law has at least an hour for herself daily.

“It is a labor of love. Our roles have changed now and I’m like a mother to my mother,” Law said.

The Alzheimer’s Association’s Northern California and Northern Nevada Chapter is hosting virtual support groups and classes for people with dementia and their caregivers. It also has a 24-hour health line for caregivers seeking tips on caring for people with dementia.

“They’re able to find that they’re not alone in this,” said Elizabeth Edgerly, executive director of Alzheimer’s Association’s local chapter.

The ‘balancing act’ of protecting

Dementia most likely does not increase risk for COVID-19, the respiratory illness caused by the new coronavirus. But people with dementia are more likely to be older adults, people who are at higher risk for contracting the virus. They may also have underlying health conditions that can weaken their immune systems.

The behaviors of people with dementia could also increase their risk of infection as they may forget to wash their hands.

It’s a balancing act explaining the pandemic to those with dementia without stirring anxiety. Generally, caregivers should tell those with dementia the basics of the pandemic without delving into the details, though it varies by person how much they can comprehend, according to Jennie Clark, a gerontologist and program manager of the memory support program at Stanford Health Care.

“A good way to say it is that, ‘There is a health pandemic that’s causing people to shelter-in-place so we’re not able to participate in the normal daily activities, but there are a lot of scientists that are working on this and they’re trying to find a cure, a vaccine,’” Clark said.

Caregivers should reassure their loved ones with dementia that they’re safe and loved when they get worried and anxious about the pandemic, Clark added.

Edgerly urges caregivers to limit exposure to the news and be aware that people with dementia may pick up on the anxiety of those around them. To ease agitation and sleep disturbances during the pandemic, caregivers should take those with dementia outside in their yards for fresh air, Ayati said. Caregivers should also remember to take care of themselves, he added.

Castaniada’s sister looks after their dad at least 40 hours a week at his home. Without her, Castaniada says his dad would be at an assisted living facility, away from his home in San Jose where he has lived for 50 years.

“To have a family member devote that much time and energy to caring and loving is amazing,” Castaniada said.

Contact Nicholas Chan at [email protected] or follow @nicholaschanhk on Twitter.