The Covid-19 pandemic is reinforcing a bleak lesson that we should have taken seriously, but we did not: some diseases harm not only patients, but also people close to them, with repercussions throughout society.
In the USA, counts of patients and deaths is approaching 30 million and 540,000, respectively, as I write this. Millions more suffered isolation, depression, anxiety, and declining health. More than 20 million saw cuts in their wages or even unemployment.
That number reminds me of Alzheimer’s disease.
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It is among the main causes of disabling cognitive impairment, better known as dementia. The recent launch of the Alzheimer’s Association Annual Report of Facts and Figures, its 14th since 2007, summarizes the damage: 6.2 million people living with the disease receive care from 11 million caregivers who suffer sustained damage to their mental health and economic well-being.
The reverberating effects of dementia are so vast and sustained that American families cannot bear full responsibility for their care. Once the Covid-19 pandemic has gone down in history, we must finally address all the ramifications of dementia. Our experience with Covid-19 will offer valuable lessons.
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Certainly, Alzheimer’s disease and other brain diseases that cause dementia, like Parkinson’s and Lewy body diseases, are not infectious. But they seem to spread the same way.
The husband and caregiver of one of my patients expressed this more eloquently than facts and figures. Like many people living with dementia, the patient struggled to recognize and explain her deficiencies. Her husband had to step in and provide me with the information I needed to care for her. In the midst of his vivid narrative of the daily care he gave her, he grabbed his chest and exclaimed: “I have Alzheimer’s disease! “
In a sense, it does. Her life – her time, her attention and her resources – are involved in her daily care. The illness is costing him time that he might otherwise have devoted to work and family. He is one of millions of caregivers whose expenses for time and money represent as much as two thirds of the multibillionaire annual cost of the disease.
Last year with Covid-19 was a terrible natural experience, testing what it means to live like this couple. The results are daunting and breathtaking. Americans have suffered the terrible consequences of being kept at home and away from care, services and support, such as childcare, school, work, primary care, exercise or recreation at a gym, family and friends.
American families had to fend for themselves, pay out of pocket and find out how to reconcile work and life in the best possible way. Many had to drop some balls, mainly women. Compared to men, women have lost many more jobs than economists say, not of a recession, but of a “her-assignment. “
For decades, these have been the experiences of individuals living with dementia and their caregivers.
Because most primary care doctors are both unprepared and with few resources to assess patients with memory complaints, families can spend months, even years, in the struggle to receive a clear diagnosis. And after diagnosis, they struggle to find care.
A patchwork of social insurance programs created by the Medicare, Medicaid and Affordable Care Act provided most Americans with access to medical appointments and hospitals to diagnose and treat illnesses. We do not have a similar program to support living with disease for years and years.
A recent report from the National Academy of Medicine concluded that the coordination of care, education and training benefit both people living with dementia and their caregivers. But most Americans who need this care – those of the middle class – are, like millions of quarantined families, left alone to find out. And most of that work is in the hands of women, who represent two-thirds of America’s caregivers.
This exhausting pandemic will end. And when that happens, I hope that our collective sufferings have created a moment of solidarity that opens us to change. We have at least three great opportunities to care for the millions of Americans who live with dementia and other chronic and disabling diseases.
First, Covid-19 showed us the incredible power of day-to-day technologies to provide care. In the space of just a week, my practice at the memory center carried out a service revolution. We made the complete transition from face-to-face visits to virtual visits, services and support. Since tele-visits take less time and take less trips, many of my disabled patients and their caregivers, especially caregivers who work, value these visits more than personal visits. Long after Covid-19 has disappeared, we must continue and develop these technologies. They are among the main solutions for the lack of access to diagnostics and care.
Imagine a future in which a child in New York receives a message that his mother in Florida has triggered an alert because of a unusual funds transfer from your checking account. After the diagnosis of dementia, a car without a driver takes her to her appointments and errands. A geo-tracker offers her and her family some guarantee that she remains in her family neighborhood on her daily walks.
The United States needs to launch an innovation race in technologies that link home, community, health and care worlds to detect and monitor disabling cognitive disabilities.
Second, we wake up to care. The revolution in visitation policies in hospitals and long-term care facilities shows this. Prior to Covid-19, policies were simply posting the allowed hours. Then, when Covid-19 was hit, it became draconian bans for all visitors, except for those accompanying pregnant women, children and the dying. Policies now recognize that some visitors are essential family caregivers.
Why? Its presence helps the person with disability due to dementia to maintain their health and well-being. A caregiver knows how to read the person’s tips and peculiarities to alleviate their anxieties, encourage them to eat and drink and help them get up and out of bed to maintain balance and mobility and prevent delirium, an acute decline and typically devastating on cognition. The blockade shows how, without this type of caregiver, individuals disabled by dementia suffer severely. Caregivers, we discovered, are an essential cognitive prosthesis, a kind of wheelchair for the mind and morally powerful.
Getting family caregivers to be part of the care team increases the momentum to design hospital rooms to better accommodate them. They also require national adoption of the Counseling, registration, caregiver qualification. The law in 40 states, on the other hand, requires hospitals to ask the patient who their caregiver is, to talk to that caregiver about care plans and, at discharge, give guidance. It must be the law of the country.
Third, we must reform the system that requires families in the United States to assume full responsibility for paying for care. President biden ran on a platform which required tax and social security credits for unpaid family caregivers. These are steps in the right direction. They recognize the great American tragedy of dementia and other disabling diseases.
But these steps are very small.
There are successful models. At the Germany, for example, a self-financing distribution system that ensures that everyone has immediate access to essential long-term care services and support. In America, conversations about these programs stop because of concerns about socialism.
I find that bizarre. Long-term social insurance will not take away our freedom and prosperity. Dementia is.
Jason Karlawish is a professor of medicine, medical ethics and health and neurology policy at the Perelman School of Medicine at the University of Pennsylvania, 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 can we do about it” (MacMillan, 2021).