The long, exhausting reach of dementia care

The Covid-19 pandemic is reinforcing a grim lesson we should have taken to heart but haven’t: Some diseases harm not only patients but also people close to them, reverberating throughout society.

In the U.S., the tallies of patients and deaths is nearing 30 million and 540,000, respectively, as I write this. Millions more have suffered isolation, depression, anxiety, and declining health. More than 20 million have seen cuts to their pay or even unemployment.

This toll reminds me of Alzheimer’s disease.

It is among the leading causes of disabling cognitive impairment, better known as dementia. The recent release of the Alzheimer’s Association’s Annual Facts & Figures Report, its 14th since 2007, summarizes the harms: 6.2 million people living with the disease receive care from 11 million caregivers who experience sustained harms to their mental health and economic well-being.

The reverberating effects of dementia are so vast and sustained that America’s families cannot bear all the responsibility for care. Once the Covid-19 pandemic passes into history, we must finally address the full ramifications of dementia. Our experience of Covid-19 will offer valuable lessons.

To be sure, Alzheimer’s disease and other brain diseases that cause dementia, such as Parkinson’s and Lewy body diseases, are not infectious. But they seem to spread just the same.

The husband and caregiver of one of my patients expressed this more eloquently than facts and figures. Like many persons living with dementia, the patient struggled to recognize and explain her disabilities. Her husband had to step in and provide me with the information I needed to care for her. Midway through his vivid narrative of the day-to-day care he gave her, he gripped his chest and exclaimed, “I have Alzheimer’s disease!”

In a sense, he does. His life — his time, his attention, and his resources — are wrapped up in her daily care. The illness is costing him time he otherwise could devote to work and their family. He is one among the millions of caregivers whose expenses of time and money account for as much as two-thirds of the multibillion-dollar annual cost of the disease.

This past year with Covid-19 have been an awful natural experiment testing what it means to live like this couple. The results are breathtakingly dispiriting. Americans have suffered the awful consequences of being kept home and away from care, services, and supports such as child care, school, work, primary care, exercise or recreation at a gym, and family and friends.

America’s families have had to fend for themselves, pay out of pocket, and figure out as best as they can how to juggle work and life. Many had to drop some balls, especially women. Compared to men, women have lost so many more jobs that economists speak not of a recession but of a “she-cession.”

For decades, these have been the experiences of individuals living with dementia and their caregivers.

Because most primary care clinicians are both underprepared and underresourced to evaluate patients with memory complaints, families can exhaust months, even years, in a struggle to receive a clear diagnosis. And after diagnosis, they struggle to find care.

A patchwork of social insurance programs created by Medicare, Medicaid, and the Affordable Care Act have provided most Americans with access to doctor visits and hospitals to diagnose and treat diseases. We don’t have a similar program to support living for years and years with a disease.

A recent report from the National Academy of Medicine concluded that care coordination, education, and training benefit both persons living with dementia and their caregivers. But the majority of Americans who need this care — those in the middle class — are, like the millions of families under quarantine, left alone to figure things out. And most of this work is in the hands of women, who comprise two-thirds of America’s caregivers.

This exhausting pandemic will end. And when it does, I have hope that our collective sufferings will have created a moment of solidarity that opens us to change. We have at least three grand opportunities to care for the millions of Americans living with dementia and other chronic and disabling diseases.

First, Covid-19 showed us the awesome power of day-to-day technologies to deliver care. In the span of just one week, my memory center practice executed a revolution in care. We completely transitioned from face-to-face visits to virtual visits, services, and supports. Because tele-visits take less time and travel, many of my disabled patients and their caregivers, especially working caregivers, value these more than in-person visits. Long after Covid-19 is gone, we must continue and develop these technologies. They are among the key solutions to the lack of access to diagnosis and care.

Imagine a future where a son in New York receives a text that his mother in Florida has triggered an alert because of an unusual transfer of funds from her checking account. After her diagnosis of dementia, a driverless car brings her to her appointments and errands. A geo-tracker offers her and her family some reassurance that she remains within her familiar neighborhood on her daily walks.

America needs to launch a race of innovation in technologies that link the home, community, health care, and caregiving worlds to detect and monitor disabling cognitive impairments.

Second, we have become woke to caregiving. The revolution in visitation policies at hospitals and long-term facilities shows this. Before Covid-19, the policies were simple postings of the permitted hours. Then, when Covid-19 hit, they became draconian prohibitions of all visitors except for those accompanying pregnant people, children, and the dying. Policies now acknowledge that some visitors are essential family caregivers.

Why? Their presence helps a person disabled by dementia to maintain their health and well-being. A caregiver knows how to read the person’s cues and quirks so as to assuage their anxieties, urge them to eat and drink, and help them to get up and out of bed to maintain balance and mobility and prevent delirium, an acute and typically devastating decline in cognition. The lockdown shows how, without this kind of caregiver, individuals disabled by dementia suffer gravely. Caregivers, we have discovered, are an essential cognitive prosthetic, a kind of wheelchair for the mind, and a morally powerful one at that.

Making family caregivers part of the care team adds impetus to designing hospital rooms to better accommodate them. They also demand national adoption of the Caregiver Advise, Record, Enable Act. Now the law in 40 states, it requires hospitals to ask a patient who their caregiver is, to talk with that caregiver about the plans for care and, at discharge, and to provide them with instructions. It should be the law of the land.

Third, we must reform the system that requires America’s families to bear all the of the responsibility to pay for care. President Biden ran on a platform that called for tax and social security credits for unpaid family caregivers. These are steps in the right direction. They acknowledge the great American tragedy of dementia and other disabling diseases.

But these steps are too small.

Successful models exist. In Germany, for example, a self-financing, pay-as-you-go system assures that everyone has ready access to essential long-term care services and supports. In America, conversations about such programs stall over worries about socialism.

I find this bizarre. Long-term-care social insurance isn’t going to take away our freedom and prosperity. Dementia is.

Jason Karlawish is a professor of medicine, medical ethics and health policy, and neurology at the University of Pennsylvania’s Perelman School of Medicine, co-director of the Penn Memory Center, and author of “The Problem of Alzheimer’s: How Science, Culture and Politics Turned a Rare Disease Into a Crisis and What We Can Do About It” (MacMillan, 2021).

Hear Karlawish talk with an Alzheimer’s caregiver in an episode of the “First Opinion Podcast.”