The Covid-19 pandemic reinforces a bad lesson we had to take to heart, but not: some diseases harm not only patients but also people close to them, which resonate throughout society.
In the US, the scores of patients and deaths is closer to 30 million and 540 000 respectively, as I write this. Millions of others suffered isolation, depression, anxiety, and declining health. More than 20 million have seen it reduce their remuneration or even unemployment.
This toll reminds me of Alzheimer’s disease.
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It is one of the leading causes of cognitive impairment, better known as dementia. The recent release of the Alzheimer’s Association Annual fact and figure report, which is the 14th since 2007, gives a summary of the damage: 6.2 million people living with the disease receive care from 11 million caregivers who are permanently harming their mental health and economic well-being.
The repercussions of dementia are so great and sustained that America’s families cannot bear all the responsibility for care. Once the Covid-19 pandemic goes down in history, we must finally address the full consequences of dementia. Our experience with Covid-19 will provide valuable lessons.
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To be sure, Alzheimer’s disease and other brain diseases that cause dementia, such as Parkinson’s and Lewy’s body diseases, are not contagious. But they seem to be spreading exactly the same.
The husband and caregiver of one of my patients expressed it more eloquently than facts and figures. Like many people living with dementia, the patient struggled to recognize and explain her disabilities. Her husband had to step in and provide me with the necessary information to take care of her. In the midst of his lively account of the daily care he gave her, he grabbed his chest and exclaimed, “I has 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 cost him time he could otherwise devote to work and their family. He is one of the millions of caregivers whose time and money cost so much two thirds of the multimillion dollar annual cost of the disease.
The past year with Covid-19 has been a terribly natural experiment to test what it means to live like this couple. The results are breathtaking. Americans have suffered the terrible consequences of being kept at home and not caring, services and support such as child care, school, work, primary care, exercise or recreation in a gym, and family and friends.
The American families had to take care of themselves, pay out of pocket and figure out as well as possible how to juggle with work and life. Many had to drop balls, especially women. Compared to men, women have lost so much more jobs that economists are not talking about a recession, but about a ‘sy-session. ”
These have been the experiences of individuals living with dementia and their caregivers for decades.
Because most primary care clinicians are both underprepared and undermanaged to evaluate patients with memory complaints, families can exhaust months, even years, in a struggle to get a clear diagnosis. And after diagnosis, they struggle to get care.
A patchwork of social insurance programs created by Medicare, Medicaid, and the Affordable Care Act gave most Americans access to doctor visits and hospitals to diagnose and treat diseases. We do not have a similar program to live with a disease for years and years.
A recent report from the National Academy of Medicine concluded that care coordination, training and education are beneficial to both people 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 make up two-thirds of American caregivers.
This exhausting pandemic will end. And if that does happen, I hope our collective suffering has created a moment of solidarity that opens us up to change. We have at least three wonderful opportunities to care for the millions of Americans living with dementia and other chronic and disability diseases.
First, Covid-19 showed us the amazing power of everyday technologies to deliver care. In the space of just one week, my memory center carried out a revolution in care. We have completely transitioned from personal visits to virtual visits, services and support. Because tele-visits take less time and travel, many of my disabled patients and their caregivers, especially working caregivers, appreciate it more than personal visits. Long after Covid-19 is gone, we need to continue and develop these technologies. This is one of the most important solutions to the lack of access to diagnosis and care.
Imagine a future in which a boy in New York receives a text that his mother in Florida caused a warning due to a unusual transfer of funds from her checking account. After her diagnosis of dementia, a motorless car brings her to her appointments and assignments. A geo-tracker offers her and her family the reassurance that she will stay in her familiar surroundings during her daily walks.
America needs to launch a race of innovation in technologies that connect the worlds of home, community, healthcare and care to determine and monitor cognitive impairments.
Second, we woke up from care. The revolution in visiting policies at hospitals and long-term facilities shows this. Prior to Covid-19, the policy was simple positions of the allowed hours. When Covid-19 strikes, they become forbidden visitors, except those accompanying pregnant people, children and the dying. Policies now acknowledge that some visitors visit it essential caregivers.
Why? Their presence helps people with disabilities through dementia to maintain their health and well-being. A caregiver knows how to read the person’s clues and peculiarities to alleviate their worries, encourage them to eat and drink, and help them get up and get out of bed for balance and mobility. maintain and prevent delirium, an acute and typically devastating deterioration. in cognition. The exclusion shows how individuals with dementia severely suffer without this caregiver. Caregivers, we have discovered, are an essential cognitive prosthetics, a kind of wheelchair for the mind and a morally powerful one at that.
By making family caregivers part of the care team, it is a driving force to design hospital rooms to better accommodate them. They also demand the national adoption of the Caregiver advises, records, activates law. According to the law in 40, hospitals are required to ask a patient who their caregiver is, to talk to the caregiver about the plans for care and, upon discharge, and to give them instructions. This should be the law of the land.
Third, we must reform the system that requires America’s families to take full responsibility for paying for care. President Biden ran on a platform it calls for tax and social security credits for unpaid caregivers. These are steps in the right direction. They acknowledge the great American tragedy of dementia and other disabilities.
But these steps are too small.
Successful models exist. In Germany, for example, a self-financing, pay-as-you-go system ensures everyone has access to essential long-term care services and support. In America, conversations about such programs do not remain concerned with socialism.
I find it bizarre. Social insurance for long-term care will not take away our freedom and prosperity. Dementia is.
Jason Karlawish is a professor of medicine, medical ethics and health policy and neurology at the Perelman School of Medicine of the University of Pennsylvania, co-director of the Penn Memory Center, and author of “The problem of Alzheimer’s: how science, culture and politics have turned a rare disease into a crisis and what can we do about it” (MacMillan, 2021).