After a few days of social distancing, staff at the Penn Memory Center began receiving distress calls. My husband refused to come in from the garage. My mother pushed me. A man told us he feels as if he’s in jail -- his wife can’t be left alone, and he can’t leave the house with her because she walks up to strangers.
Now more than ever, caregivers and persons living with dementia are struggling. The social distancing necessitated by the COVID-19 pandemic has shattered the country’s already-precarious system for community-based long-term care.
Nearly 5,000 adult day centers are closed. For the 286,000 people who had been attending the centers, there’s no more art therapy, sensory rooms, or expertly trained staff. Many in-home aides have been let go. All of a sudden, millions of family caregivers are on their own.
Our experience suggests this is already causing a surge in mental health problems, what clinicians call “behavioral and psychological symptoms of dementia.” Families call it for what it is: agitation, aggression, sometimes violence.
“He’s become so much more confused,” said Monica Hottenstein, 70, of Moorestown. Her husband, Tom, has Lewy Body Dementia, a disease that afflicts him with hallucinations, delusions, short-term memory loss, and worsening verbal skills. Tom began attending an adult day center two days per week in 2018. Since then, he increased to five days per week, a schedule that helped him stay socially engaged and also gave Monica time to run their household.
On March 15, the adult day center that he had been attending closed indefinitely. The Hottensteins have been in their house, alone together, ever since.
“At the adult day center, they did activities — music, chair exercises, trivia, bingo,” Monica said. “I can’t provide the same structure, variety, or social exposure, because I’m also taking care of the house, the bills, the laundry — everything else that has to be done here.” Tom often asks when he can go back to his classes. “And I can’t tell him — I don’t know,” Monica said.
Not enough support
For people like the Hottensteins, being seen at a memory center means being connected to a network of physicians, psychologists, and social workers trained in dementia. Monica has access to our center’s online “caregiver community forums,” where caregivers can connect with one another to swap experiences and solutions. Most are building on skills they learned before the pandemic, during in-person classes and support groups.
Yet, even in normal times, most people with dementia don’t have access to a memory center, an adult day center, or other supportive infrastructure. Half of primary-care doctors feel unprepared to care for persons living with dementia, and most report there aren’t enough dementia specialists to see their patients. Adult day centers cost an average of $75 per day and aren’t widely available. The median cost for a home health aide is $23 per hour. For spouses with dwindling financial reserves, or adult children struggling to care for their own young families, paying for dementia care was impossible before the pandemic.
Now, even those who could afford the right supports aren’t getting them. We’ve unwillingly entered into an awful social experiment, testing what happens when there are little to no community resources for people living with dementia. The results are disturbing.
Caregivers stuck at home are asking us for medications to help with their loved one’s aggressive behavior. Usually, we can avoid these prescriptions, and instead recommend going outside, socializing, and engaging in structured activities. But in these unusual times, we’ve had to do the best we can to make life manageable. We obey the dictum of geriatric prescribing, to start with a low dose and increase it slowly, knowing all along that we’re trying to heal a broken arm with an aspirin.
An untenable future
We expect, from April 2020 forward, there will be a spike in prescriptions for antipsychotics, antidepressants, and antianxiety medications -- all “last-in-line” treatments to quell the behavioral symptoms of dementia. We believe that in the months to follow, a bump in diagnoses of falls, some with hip fractures, as well as strokes and sudden death arrests — all complications of these drugs — might be seen. We may notice a spike in admissions to nursing homes this summer, precipitated by the agitation we are seeing today.
When the country goes back to work, we’ll be left with bitter proof of the value of dementia care. We’ll understand why adult day centers and funding for caregiving in the home are critical for the health and security of people with dementia and their families. Our peer nations have social insurance to pay for this care, but the United States pays for it only once families have impoverished themselves. The costs to families who are left on their own to care for loved ones with illness or disability are immense, measured in hours of uncompensated care and in harm to their own jobs and well-being.
The lack of any coordinated long-term care policy has forever been untenable. The coronavirus pandemic has only made the consequences even clearer; with soaring unemployment, even fewer caregivers will be able to afford the supports that should be universal. Without change, we’ll be forcing even more people to make tragic choices, like choosing between paying for their children’s college education or their parent’s dementia care.
For now, we’ve considered increasing Tom’s antidepressant, in the hopes that it helps with his anxiety. Our social workers have planned to call Monica to offer support. We’ve sent her the “stay at home survival guide” written by our social workers to help people with caregiving during social distancing. And we’re hoping that, when the pandemic ends, America will finally invest in fixing dementia care.
Sara Manning is a fellow at the Penn Memory Center. Allison K. Hoffman is a professor at the University of Pennsylvania Carey Law School and a research scientist at the Penn Memory Center. Jason Karlawish is a professor of medicine at the Perelman School of Medicine and codirector of the Penn Memory Center.